First Time

The past year has been challenging, to say the least.  Tommy has been gone for 18 months, and I have struggled to deal with decisions that should not be hard, such as, what to eat for supper.  But I haven't stopped working, getting out of the house, and I haven't given up. I still have lots of "stuff" to work through, but I believe I am getting there, albeit slowly.

I have made several trips to see our daughter, which means driving about 400 miles one way.  But it also means driving by the places where Tommy and I have often stopped, taken pictures, checked out the flea market, and visited with some of the same people at the stops we made.  So each trip has been sort of a self test to see if I can stop at some of the same places, not for Tommy, but for myself.

Laugh if you will, but I have sort of a "pattern".  I set Rhonda the GPS for my destination, playing with the route so it kind of matches what I intend to do.  I leave the voice instructions "on", so I can argue with Rhonda when I take a turn she didn't expect.  I get my selection of cds ready for the player in the van, and truthfully, most of them are Neil Diamond.  (I recently rediscovered how much I like his music.)  

I start the car, ask God for safe travels and guidance in my driving, and head for my destination.  I think I have found my "inner rock star", as I have listened to my cds often enough that I can now sing along with Neil in harmony (I am an alto).  I can bounce, pat my left foot, sing, make comments about other drivers, and somehow, I get to my destination in a reasonable amount of time.

This time, I was listening to a new Neil cd, "Melody Road" (2014), which included Neil's song entitled "First Time". It is a piece he wrote in his early-70's, and at first glance it seems to be talking to a young person just starting out.  However, as I listened to this one several times on my most recent trip, a light bulb went on over my head.

For the first time in my life, I am really "on my own", and I really wasn't prepared for this situation.  I live alone, set my own schedule, decide what to cook (or not), where I want to go, how I want to spend my time.  We married while we were in college, and I had only been away from home to live in a dorm. Essentially, I went from living at home with my parents to living with my husband.

I went for a planned doctor's check up just before I left on the trip. While there, she asked what I was doing, etc.  I told her about my planned trip, and she said, "You faithfully cared for Tommy at home for a long time, and now this is YOUR time, so enjoy it."

I am doing many things for the "First Time", and it can be a bit daunting. But my doctor was right.  I will not be honoring my precious husband's memory by moping around the house, staying in deep mourning, not experiencing the joy of life that is still out there for me. Being a part of our children and grandchildren's lives, going to special events, watching the grands grow up, all of this brings joy to my heart. And I truly believe that by honoring Tommy's memory, my joy is doubled.

There are going to be many "First Times" ahead for me, I think.  I feel God's guidance all the time, and I am leaning on Him to get me through all of the difficult "first times".  I lean on many verses, but tonight Philippians 3:13-14 came to mind:

(13) "Brothers and sisters, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, (14) I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus."

First time, how do you feel?
Little bit strange to a little unreal
That first time, you're far from home,
Finally out there on your own
And it's your time for making it happen
It's your time, and it's gonna happen your way
Every step you take from now on,
Be taking as far as you can
You oughta be moving along
Singing your song, and making your plans

First time, it comes unaware,

You're un-rehearsed, and unprepared for that
First time, you're free unbound
No paying it safe, gotta jump off the ground
It's your time, and good things will happen
But this time, you gotta put your heart on the game!
You're out for the first time,
But you're not really out there alone
Keep doing it, the words gonna spread
Get out of your bed, sat out on your own.
Keep trying, be fine first time!

Letting Go? Probably Not.

Tommy has been gone for 4 months, and in spite of promising myself and my family that I wouldn't , I have dug a hole and crawled in it, it's not as deep as it could be.  I am struggling, but I am working hard at getting out, going to work, doing things with friends and family.  I finally made it to Sunday School week before last - that is still hard.

The hardest things I've had to do?  The first day/week back at work, the first time going to church, the first time I came home from work to an empty house, realizing that for the first time in more than 3 years I did not have to hurry home.  Christmas was really hard, but leaving the day after Christmas to go to Ruthe's made it much easier.  However, if it tells you anything, I haven't been able to bring myself to take down the Christmas tree.

And yesterday - the hardest hardest thing was finally sitting down and filing our income tax.  I managed to get the process finished, the taxes filed, Federal on-line, and State printed and ready to mail. But I was a basket case at the end. But I really had to force myself to sign the state tax form, "filing as surviving spouse".  And I cried and cried, and couldn't sleep.  I've had a headache all day. And as I drove away from the Post Office, I was in tears.

So how deep is the hole I kept promising not to crawl into? I think it is deeper than I'm willing to admit.  I am managing to get to work and be productive, but when I get home, I am sitting in the chair and staring at the tv.

I am still exhausted. It is physical and it is emotional as well. Emotionally exhausted, some days it is all I can do to get up and get going. And, I still have many many "what if I had. . ." thoughts.  I know this is "normal", whatever that is, but it is not moving me through the grieving process.

I am blessed to have a good support system, children, friends, co-workers.  I simply have to hang on and work my way through this pain.  I really thought that because I believed that I began grieving when Tommy was forced into retirement and then was diagnosed with dementia, that when the end came, I would be ready to be free.  But I don't feel free.  I still feel stuck and I feel guilty because sometimes I do feel free.  I want to stay home, but I really need to keep working so I will have the income I need.  And I need to be working simply to keep me moving.  So I still feel stuck.

I am a naturally positive person and some days I can be true to my positive self.  But I have days that I feel very negative - cranky, irritable, weepy.  Those are the days that are the hardest.  Sometimes it's not even a whole day - last night was a perfect example of that. Those are the times when the struggle seems overwhelming.

Most of the time I feel God's presence helping me through.  I simply have to keep reminding myself that I am not the first woman to lose a husband, not the first wife/caretaker to be exhausted at the end of that long dark illness, and that I have many loving people around me, with lots of life ahead to enjoy and perhaps make a positive difference for someone.

Coping - Part Three: The Spiritual Side

Full-time 24/7 caregiving places stress on every aspect of your life.  Whether your marathon is just beginning, or it's been so long that it seems never-ending, you are already aware of this.  Finding outlets for stress relief is vital for your well-being and health, both physical and spiritual.  God made us spiritual beings and when that part of our lives dries up, no amount of "away time" or crafting, sewing, reading, TV watching will substitute.

I find true renewal in Bible study and prayer.  To be honest, I have always had trouble "not being in control" of events in my life.  And although my head says, "I'm putting this in God's hands", most of the time, my heart refuses to let go.  My husband has had multiple surgeries, most of them an emergency or a physical situation that finally got so bad, he had no choice.  I think I have finally learned to trust that God is going to work out the details.  But on more than one occasion He has had to thump me on the head to get my attention, reminding me once again to Let Go and Let God.

That being said, I have really been working at a regular devotional and Bible reading time. In January, I decided to read the Bible through this year, using a devotional Bible which divides up the readings and begins each day with a very short devotional which applies to the readings.  I can't begin to count how many times the reading for the day, or the devotional thought, gave me just the lift I needed at the moment.

Scriptures that I lean on?  Isaiah 40:31, Philippians 4:13, Philippians 4:19, Micah 6:8, Psalm 56:3, and my husband's favorite, Mark 9:23.  I'm sure you have yours as well.

In really stressful moments (joyful moments too), I sing -- out loud, sometimes off key, but always with a prayerful heart.  As a child and teenager, I was in both morning and evening services every Sunday at our local Southern Baptist Church.  I sang in the choir all through my high school years, and the old hymns in the Baptist Hymnal are imbedded in my memory.  (Usually the 1st, 2nd, and last verses!)  Even though many of the old songs are "out of fashion" now, the message in the lyrics bring me peace in really stressful times.  Besides, how can you feel depressed after singing "To God Be the Glory" at the top of your lungs?

Finally, praying is something that we do need to schedule time for, but I find myself breathing short bursts in odd places:  bathroom, at the kitchen sink, driving to work, or sitting quietly before sleep catches up with me.  This is where I gather the strength I depend on as I know the He is always listening, whether I'm praising His name, praying for a friend in need, asking forgiveness where I have failed, or thanking Him for my blessings, large and small.  Believe me, in the lows and highs of this long marathon we are in, it is only through leaning on God's strength that we will survive.

Coping - Part Two -- Physically and Mentally

I think the phrase I hear the most often is "take care of yourself".  Certainly it's a good idea, but I have found that is probably the hardest part of this journey.

If your loved one is like mine, caregiving is a 24/7 job.  That means that if you want to do "something for yourself", you may be able to schedule it, or it may be something that happens randomly, or as I like to think, serendipitously!  (God has a way of opening up a slot of time that is an unexpected blessing.)

What is "taking care of yourself"?  I believe it is relieving the day-to-day stress of caregiving, getting away from the house if possible, or setting aside time to do things you like to do.  I love to read, and having books on the e-reader has made that much easier for me.  The variety of books I have on my Nook allows me to pick and choose whatever suits my time constraints and the mood I'm in.  I have fiction, biography, history, devotionals, just to name a few.  So if I only have 15 minutes, I can read a bit, or play some Solitaire if that's what I want.

You may be a crafter, or quilter, or love to sew.  I'm not talented in that area, but if that was what I needed to do for me, I would clean off my dining room table (a challenge in itself!), and set up my craft/sewing center there.  Our house is small, and that's the best place I would have.  By doing that, I could work on on-going projects when I had a few minutes.  It might look messy, but it would make working in short bursts possible. I'm sure you could come up with some good ideas of your own.

Getting out of the house by myself is one of my challenges.  I can leave Tommy alone for a short while, as in going to pick up or drop off one of the grandkids, but leaving him longer than 30 or 40 minutes is not a good idea.  So taking care of needed day to day errands can be a challenge.

For instance, just getting a haircut can be a adventure.  Scheduling one sometimes works out, so that I can plan to have someone stay with Tommy while I'm away.  But often I end up cancelling my appointment because of some crisis that requires my presence.  One solution I found:  there are a couple of places in town which accept walk-in's, so that has been my go-to when my hair absolutely positively has to have a good hair cut!

Shopping can also  be another challenge.  It used to be a chore that had to be done, or an opportunity to shop recreationally.  Now, getting out to shop requires a bit of planning ahead. When our son got married, his wife and I got in the habit of going on Friday nights to get our groceries.  It has become such a habit that I start my next week's list as soon as I get back from Wal-Mart.  I keep a pad on the refrigerator so I can jot things down as I think of them.  Because we have this "scheduled event", we have figured out ways to have someone with Papa.  My grandson is 15, and he is pretty good at helping Papa while we're away.  And since Wal-Mart is only 10 minutes from the house, I can get home quickly in an emergency.

And, I have finally figured out that on-line shopping really works!  I do enjoy messing around on the computer, searching for information, browsing on Ebay, and this has also been my "go-to". Our Christmas shopping was accomplished earlier than usual because I "let my fingers do the walking".  As a result, I enjoyed Christmas and all of the fun parts that go with it because I was not stressed trying to get that last perfect gift.

One other way I "take care of myself" is my part-time job.  Until two years ago, I worked full time in the Student Records Office at Campbellsville University.  Then, with the realization that Tommy's health was only getting worse, and I could not give my full attention to my job and take care of him, too, I took our open part-time position.  The hand writing had been on the wall for at least 3 months, as we knew our part time lady was leaving.  I just didn't see it.  When God thumped me on the back of the head and said "take the part time job -- what are you waiting for?", the transition was almost seamless.

I'm sure you're wondering how working can be "taking care of me" -- but I am blessed beyond measure in the circle of Christian sisters I work with. We truly care about one another and forgive each other for our quirks!  And I truly enjoy the work I do.  I feel I am contributing to our office's mission, I enjoy my assigned tasks, and that is true stress relief.  I have a precious friend who stays with Tommy while I am at work, and I trust her to keep me informed of anything I need to know while I'm away.

"Coping" involves many facets of our lives, physical, emotional, spiritual.  I am blessed in that I have a wonderful support system of friends and family I can reach out to when I'm at the end of my rope.  If you stop and look around, you do too.  But you have to let them help, even if it seems like something as simple as sitting with your spouse so you can go to Walmart.

Coping - Part One

Coping with stress, coping with a cranky spouse, coping with a disrupted household, coping with holidays, coping with finances, coping with being "on the road" all the time, coping with . . .  You get the picture.

Let me say this:  I've had a lot of experience coping.  The surgeries I have written about are just the last two in a long sequence of Tommy's surgeries, and then there's my broken ankle and broken hip which came into play during all of this as well.  On top of that, Tommy's mother came to live with us the summer of 2005.  She was 86, in failing health, and lived 1000 miles from us, so we sort of snookered her into coming for one of her usual visits and convinced her to keep staying longer and longer. 

So when Tommy faced a cervical spine surgery the spring of 2006, I warned Mom and Tommy that with all of this to cope with, I was probably going to get cranky once in a while!  And of course, I did.  The problem was, I felt like I couldn't yell at either one of them, as the situation we found ourselves in was "nobody's fault", so I figured out a wonderful stress relief.

Our washer and dryer is in the basement.  When I reached a boiling point, I would loudly announce, "I'm going to do some laundry," and head downstairs.  Then I would proceed to yell and scream at the poor innocent washer and dryer, blaming them for whatever I was stressed about at the time.  Then I would go upstairs and speak very calmly to my husband and mom-in-law, knowing that as both of them were hard of hearing, neither one of them could hear what went on downstairs!

Not that I recommend yelling at innocent appliances, but when we humans are stressed, we have to find an outlet, or we will explode.  I call it the Mount St. Helen's Syndrome.  Yelling at the washing machine was my pressure valve, allowing me to calm down, pray it through, and then deal with my family lovingly and calmly.

There are many outlets for relieving stress.  I have a couple of different devotional books which help me find just the right prayer thought or scripture which applied to the crisis of the moment.  God has a way of putting just the right thought in my path which soothes my troubled spirit most.  In fact, I highly recommend Max Lucado's Live Loved.   I got it for my Nook, and it really helped me during the dark months last year.

Another stress outlet is music.  We all have different tastes, and I love old fashioned hymns more than anything.  On some of my "road trips" to or from the hospital or rehab, I would sing my favorites from the Baptist Hymnal, out loud, sometimes singing the alto part, sometimes off key, often through tears, but it always made me feel better and more able to cope.  All of my life, God has spoken to me through music, and this was no exception.

Laughter -- great stress reliever!  I don't sit and read joke books, but some of the funny postings on FaceBook have been perfect for a good belly laugh.  One of my friends is always posting funny things she hears from the preschoolers she teaches.  Some of my best belly laughs come from her!  And if I have time, some of my favorite funny movies fill the bill, too.

Finally, tears.  Yes, there is nothing quite so anxiety emptying as a good old fashioned cry.  I've had my share over the past year, sometimes started by something as simple as a Hallmark Card commercial!  God knows and understands when the difficulties we deal with are finally too much and gives us permission to grieve a little.  I have cried, yelled at God, cried some more, asked forgiveness, asked for peace, and at the end of my "good cry" (that's what my mother called it), I always feel empty of the tension which had so filled me up there was no room to feel His love.

That's when I feel I am truly "coping" with my caregiving marathon.  Believe me, it is not through my strength that I am surviving this marathon, but because I am relying on God's promise:  Philippians 4:13 "I can do all things through Him Who gives me strength."

Expect the unexpected!

I don't know how your life has gone, but when getting ready for any event, whether it's a trip to the grocery store or major surgery, I start with what I call Plan A.  Generally,  by the time the event actually takes place, there have been so many changes to Plan A that I am down to Plan F or Plan G.  There have been a few times I've gotten all the way to Plan Z!

Let's face it:  stuff happens.  I had admitting this, but it has taken me several decades to figure out that when "stuff" happens, I have to take a deep breath, change MY plan, and go with the new one.

Surgery is no exception to that rule.  Assistants set schedules, hospital administrators schedule operating room times, and surgeons are experts at sabotaging the best laid schedules.  So, when you are told:

 "be at the hospital by 6:30 am, post op will take about 45 minutes, surgery is scheduled for 8:00 am, and should take 2 hours.  One hour in recovery, and you should be in your room by 1:30 at the latest."  Just know that your chances of actually seeing this schedule happen as planned is about as likely as my chances of winning the lottery.  Slim to none - especially since I don't actually buy lottery tickets!

Prepare your spouse for this eventuality so his anxiety level remains as low as possible.  Most hospitals we have been in have allowed me to sit with Tommy until he is wheeled into surgery, so I had to work to be positive and calm when the inevitable delays happened. 

This was especially difficult in December 2011 when he was all prepped and then told that because his kidney "number" was not what it should be, the surgery was being scrubbed  To my relief, our surgeon stepped in and arranged for him to be admitted so tests could be run and surgery rescheduled for two days later.  As you can see, this is exactly what I'm talking about.

Honestly, I wasn't at all prepared for that kind of a delay, and I got more than a little bit weepy and anxious.  Fortunately, our son was with me, he was calm, and we were able to get through the delay.  When we prepared for the next surgery six months later, I was much calmer.  Really, I was!

The best preparation for Plans A through Z is prayer.  God knows what is going to happen and if I couldn't have depended on His strength, I don't know how I would have handled all of the unexpected problems which came up.

Best preparation of all?  Prayer!  "I can do all things through Him who gives me strength."  Remember:  "all things".

Remember - the nurse is your friend!

I'm sure if you've had any hospital experiences at all, you know that the nurses are around much more than the doctors! I have to confess that I have had to learn how to work with the nurse's assistants and the nurses so that I would be considered "part of the team", and not "someone in the way".  Believe me, it can go either way in any given situation.

You want the nurses overall to think of you as someone they can trust, that the information you give them will help them in caring for your loved one.  So here's a few simple tips.  If these are too simple sounding, forgive me -- I know there are some people out there who have had absolutely no hospital experiences at all, so I am mostly speaking to them.  Feel free to chime in with ideas of your own!

1.  It will be hard, but try to learn the names of the nurses assigned to your spouse.  That way when he needs something, you can ask for his specific nurse.
   That accomplishes two very important tasks:  (1) the nurse feels less anonymous when you interact with her by name. (I had to write the names down in the notebook -- I'm terrible with names!), and (2) his nurse knows you are keeping track of what is happening with your spouse's care, and who is responsible.

2.  Keep track of the shift change times and try to avoid calling just as the nurses are trying to give report to the new shift nurses. I kept track of when he had his pain medicine and tried to avoid him being in terrible pain needing medication at shift change time.
  
   This is the most difficult time to get help, and I think it is the most dangerous time for seriously ill patients, as I have had to wait for 30 to 40 minutes a few times for someone to come and help change Tommy's brief, tend to a beeping IV, etc., during shift change.
  
   That being said, check your watch when you have to call the nurse.  Keep track of how long it takes to actually get someone in the room -- not just the anonymous "Can I help you?" from the intercom.  If your spouse needs something urgent, walk down to the nurse's station and flag someone down.  (More than once if you have to!)

3.  Smile at the nurses and assistants when they come in and ALWAYS say thank you for everything they do, even if it's something as simple as filling the ice pitcher.  These ladies and gentlemen are on their feet for long periods of time, dealing with sick, cranky people, and a little appreciation goes a long way.

4.  This is a very difficult time for you and your loved one, and whether he is a "good" patient or not, you be a "good" spouse.  In other words, remember what Jesus said:  "do unto others as you would have them do unto you.". 

5.  Remember, that the health care staff are people with children, parents, soccer matches, car trouble, helping children with homework, and all the other events that fill up life.  Most likely they do not live at the hospital, and even more likely, the pay they receive is not nearly as much as it should be.
  
   As the professionals come in and out of the room, you have an opportunity to pray for each one by name.  This simple act reminds you that we are all God's children and He cares for us all.

I hope these ideas help, and please feel free to add other hints to the list.  We are in this Caregiving Marathon together,