More Changes?

I have to keep reminding myself each day that "Today is the best day ever"!  It's become a daily mantra.  I am finding out that with each day, things keep evolving and change is definitely inevitable.  Life seems to be on a slow motion spiral and when it will end only our Heavenly Father knows.  I realize that generally today won't be as good as yesterday, but that today will most likely be better than tomorrow.  This primarily relates to Joe and the unpredictableness (hmm, is that even a word?) of his life.

We are now in week two of such changes for Joe.  He has been exhibiting the following symptoms on pretty much a daily basis.  His physical therapist would not even work with him the other day for fear of Joe collapsing or worse.  The symptoms include:

• the worse of which is...plummeting blood pressure.  It went from 190/something to 80/43 in just the matter of minutes while at the cardiologist's office for a routine pacemaker checkup.
• loss of use of his legs wherein he starts to bobble in his legs and then collapses.  When assisted, his legs tend to just drag. 
• a slight trembling in his hands.
• an irregular heartbeat.

I am grateful that when these episodes have happened I haven't been alone with him as he becomes total dead weight and it is difficult to hold him up.  And, they have been witnessed while at the Senior Center by their staff, while at dialysis, while at physical therapy and most importantly, while at the cardiologist's office.  It helps to validate and confirm that there is something wrong happening.

Are these symptoms related to his new medications from a couple of weeks ago?  Are these symptoms related to the possibility of fluid returning to his brain?  Thus far this month, we have made two trips to the emergency room, had an appointment with his cardiologist, have an appointment with a neurologist next week, have had an appointment with his primary care doctor and telephone conversations with his kidney doctor and various nurses and have no answers yet.  I have been told to remove one of his blood pressure medications and move one from the morning dose to the evening dose.

At this point, it's a matter of wait and see what happens.

"A friend can tell you the things you don't want to tell yourself."  ~Frances Ward Weller

Fireproofing My Marriage

This last week has really been an eyeopener for me and my relationship with Joe.  There was an incident that took place one evening between Joe and I that had never happened before regarding Joe's mental state.  It was so frightening to me that I discussed it with his doctor the next day and she urged me to get him to the emergency room as soon as possible to have a full workup done on him.  So, I did just that.  We were at the emergency room some 7 1/2 hours while a series of tests took place.  And, near the end of the ER stay, a case worker came and spoke to each one of us individually.   Long story short - the emergency room doctor discussed Joe's unusual irrational behavior with a phone call to both his neurologist and nephrologist for a consult and direction on a new medication.  It was/has been determined that apparently Joe's vascular dementia is becoming worse.  He's now been put on another medication that will hopefully alleviate some of the stress/irritation he's been feeling, especially towards me. 

I've been quite stressed and frustrated with the deterioration of my relationship with Joe.  It's been very difficult to regard him as my husband and companion when so many of the things he's been doing have been so juvenile or childlike.  A very good friend suggested that I have to learn to "pick my battles"...meaning learn what I think is important enough to correct Joe about in his everyday activities.  I have to learn what he is and is not capable of doing.  He just flat out is not able to function mentally like he used to and I have to accept that.  A perfect example of that occurred yesterday at his physical therapy session.  He was having a very detailed oriented conversation with his therapist about something he'd  read many years ago.  He was quoting specific numbers and data.  I was amazed at how his long term memory is so intact and at the same time realizing, along with his therapist, how fractured his short term memory is becoming.  All this has slowly been working up to a point of frustration for both Joe and me - a point of frequent irritation and misunderstanding.  I haven't been picking my battles.  I hadn't understood until this last week that nothing will change Joe's behavior with all the fussing in the world.  I've learned that if he continues to not flush the toilet, or he wipes toothpaste on the clean hand towel or he gets into the food items on the second shelf of the refrigerator, his mind will not or cannot comprehend that he's doing something "wrong or unacceptable".   I'm learning to just flush to toilet or change the towel or whatever because it's just quicker, easier and won't cause extra contention.  I am trying to learn to serve my husband. 

One of the things that has also helped was watching a movie I'd had on the DVR for several weeks. It was called "Fireproof".  We finally got around to sitting down together to watch it.

It's about...At work, inside burning buildings, Capt. Caleb Holt lives by the old firefighter's adage: Never leave your partner behind. At home, in the cooling embers of his marriage, he lives by his own rules. After seven years of marriage, Caleb and Catherine Holt have drifted so far apart that Catherine wishes she had never married. Neither one understands the pressures the other faces--he as firefighter and she as the public relations director of a hospital. Regular arguments over jobs, finances, housework, and outside interests have readied them both to move on to something with more sparks.

As the couple prepares to enter divorce proceedings, Caleb's father challenges his son to commit to a 40-day experiment he calls 'The Love Dare.' Wondering if it's even worth the effort, Caleb agrees, but more for his father's sake more than for his marriage. When Caleb discovers the book's daily challenges are tied into his parents' new found faith, his already limited interest is further dampened. While trying to stay true to his promise, Caleb becomes frustrated time and again. He finally asks his father, 'How am I supposed to show love to somebody who constantly rejects me?' When his father explains that this is the love God shows to us, Caleb makes a life-changing commitment to love God. And--with God's help--he begins to understand what it means to truly love his wife. But is it too late to fireproof his marriage? His job is to rescue others. Now Caleb Holt is ready to face his toughest job ever--rescuing his wife's heart.

As I watched this movie, it made a real change in my perspective about how I had been treating Joe and not having patience with the things he can't do any longer.  I'd taken some notes during the movie about some of the things that had been said that made a real impact with me.  The "Love Dare" were things like...

The first part of this dare is fairly simple. Although love is communicated in a number of ways, our words often reflect the condition of our heart. For the next day, resolve to demonstrate patience and to say nothing negative to your spouse at all. If the temptation arises, choose to not say anything. It's better to hold your tongue than to say something you'll regret.

In addition to saying nothing negative to your spouse again today, do at least one unexpected gesture as an act of kindness.

Whatever you put your time, energy, and money into will become more important to you. It's hard to care for something you are not investing in. Along with restraining from negative comments, buy your spouse something that says "I was thinking of you today."

Contact your spouse sometime during the business of the day. Have no agenda other than asking how he or she is doing and if there is anything you could do for them.

Think of a specific way you'd like to greet your spouse today. Do it with a smile and with enthusiasm. Then determine to change your greeting to reflect your love for them

What need does your spouse have that you could meet today? Choose a gesture that says, "I cherish you" and do it with a smile.

Begin praying today for your spouse's heart. Pray for three specific areas where you desire for God to work in your spouse's life and in your marriage.  (The biggest thing I wanted to happen this year was for Joe to find joy in his life.  I realized how can that happen if I'm not contributing to that?  What if I am one of the reasons why he can't find that joy)?

Prepare a special dinner at home, just for the two of you. The dinner can be as nice as you prefer. Focus this time on getting to know your spouse better, perhaps in areas you've rarely talked about. Determine to make it an enjoyable evening for you and your mate.

I decided to try some of these things - these love dares.  It's only been three days, but I feel and am aware of a change in my attitude towards Joe.  I've made sure that there has been a more visual display of affection between the two of us and in turn, I've felt more genuine love for him.  He's also been more loving and helpful - he's done the dishes for me a couple of times, he's folded and put away some clothes, etc.  I'm excited in our changes - particularly mine.  Home can truly be a heaven on earth.

It's Almost Like Manna From Georgia!

Look what we found in one of our local Wal-Mart store tonight!

Gonna Grovel and Beg

Back in September I signed up for a photography class I'd really wanted to take for a couple of years.  I finally decided it was time for me to do something for myself.  I got registered, someone volunteered to stay with Joe and so I went, camera in hand, to my first class.  It was such a strange situation for me all in all.

When class was over, I stepped outside into the darkness, got into my car and just sat there and started to cry.  I was overwhelmed by it all.  I couldn't remember the last time I'd been outside that late by myself - without Joe. 

I did manage to make it the the 2nd of six classes the following week, but that was my last.  I felt a considerable amount of guilt about someone else coming over to be with Joe while I was out.  I just knew this man had something he'd rather be doing that "Joesitting".  So, I quit my class so no one would have to do it anymore.

I find that happening to me quite alot.  And, even now I find that if I need to run an errand, I will wait until Joe is napping and then hurry quickly to complete the task so I can return home as soon as possible. 

I've found that many times it does no good to make any firm plans.  I have made appointments or bought tickets to attend an event and then boom!  A sudden turn in Joe's health can bring everything to a halt.  I remember that I'd look forward to the PBR (Professional Bull riders) to come to Casper.  I'd purchased our tickets near the bottom so Joe could see much better.  However, he had to use the bathroom a couple of times and I had to walk him up to the facility.  When the third time came, I was so frustrated, we just went home.  I was missing so much of it anyway.  I know these things don't happen because Joe wishes or wants them to, but it seems as though sometimes my whole life is in flux because of his condition.  I am getting used to it, in a way.  Whenever I try to schedule anything, I tell people that it all depends upon how Joe is feeling at that time.  I don't even try to schedule dinner appointments for the missionaries because our lives are so unpredictable.

Things are changing for the better though.  I used to have so much unpredictability even when it came to my being able to work a full 8 hours.  Now that he is enrolled at the adult daycare, that has taken alot of that stress off of me.  I'm feeling much better and more productive for myself.  And, I feel that between dialysis, the Senior Center and now the daycare, Joe is having more opportunities for social interaction himself.

All I know is this...expecting surprises is part of my daily life.  No one can accuse me of having a boring life.  Another photography class is starting soon.  I think I'm going to see if I can get back into the class and try it all over again.  If so, maybe I'll make all the classes this time?

Cooking Some Wild

Our neighbor, Mark, who lives across the street, gave us a Christmas present this year of an elk roast.  He'd heard me say that I had really enjoyed some elk ribs I've had in Jackson, Wyoming one time.  So, when I gave him his baked goodies Christmas present, he ran into his house and brought out the roast.

I decided I would cook it for our dinner today.  I'd never cooked elk before.  Didn't even know where to begin except to hop onto the internet and see what I could find out.  I wanted to see if it would be possible to cook it in a crock pot so that it would be cooking away while we were at church.  Yep, there were lots of recipes for that.  But, most of them suggested marinading it overnight.  Now to pick a marinade that I had all the fixin's for. 

So, I blended some soy sauce, some Worcestershire sauce, and a packet of mesquite grilling powder.  Then I stabbed the meat a few times with a knife on both side, smeared the thick liquid concoction all over it, placed it in the refrigerator and went to bed.

This morning I put it into one of my crock pots, added some water (for extra gravy according to the internet) and turned it up on high and started the cooking.  All went well, it was so tender you could cut or flake it with your fork.  The flavor was just right and the gravy tasted really good over my homemade mashed potatoes.  Not bad for a girl from South Georgia who'd never cooked elk before.

I think I may have to take Mark some more baked goodies!

Joe's New Toys

Joe is now part of the digital talking books program that is sponsored by the government.  He recieved, free of charge, the cassette player shown above that talks and gives directions.  If you stick a headphone in the side, then of course, you can't hear it.  A special tape slips into the front of the cassette and the entire book is self-contained on that one cassette.  No more turning a series of cassettes over to side 1 or 2 or A or B.  It doesn't matter if the tape is 17 hours long - it's one tape.  The only time you take it out is when you have reached "The End".

Each cassette arrives in it's own little blue plastic box.  When the tape has been heard, the mailing card is turned over on the front and mailed - no postage due!  There is a catalog of hundreds of such tapes and you just place your order of what you want and it's mailed to Joe.  20 tapes at a time, if you wish.  This is such a godsend and so much better than the tape player I had purchased for him that he has always had problems operating and flipping tapes over.  Technology is a wonderful thing!!!

The Best Is Yet To Be

I wanted to share something I read today. It's from an article written by Elder Jeffrey R. Holland entitled, "The Best Is Yet To Be". I will be taking excepts from this that really made an impact on me.

The start of a new year is the traditional time to take stock of our lives and see where we are going, measured against the backdrop of where we have been. I don’t want to talk about New Year’s resolutions, but I do want to talk about the past and the future, with an eye toward any time of transition and change in our lives—and those moments come virtually every day.

As a new year begins and we try to benefit from a proper view of what has gone before, I plead with you not to dwell on days now gone nor to yearn vainly for yesterdays, however good those yesterdays may have been. The past is to be learned from but not lived in. We look back to claim the embers from glowing experiences but not the ashes. And when we have learned what we need to learn and have brought with us the best that we have experienced, then we look ahead and remember that faith is always pointed toward the future. Faith always has to do with blessings and truths and events that will yet be efficacious in our lives.

To yearn to go back to a world that cannot be lived in now, to be perennially dissatisfied with present circumstances and have only dismal views of the future, and to miss the here and now and tomorrow because we are so trapped in the there and then and yesterday are some of the sins of Lot’s wife.
The poet Robert Browning wrote:

Grow old along with me!
The best is yet to be,
The last of life, for which the first was made:
Our times are in his hand
Who saith, “A whole I planned,
Youth shows but half; trust God: see all, nor be afraid!” 2

Some of you may wonder: Is there any future for me? What does a new year or a new job hold for me? Will I be safe? Will life be sound? Can I trust in the Lord and in the future? Or would it be better to look back, to go back, to stay in the past?

Keep your eyes on your dreams, however distant and far away. Live to see the miracles of repentance and forgiveness, of trust and divine love that will transform your life today, tomorrow, and forever. That is a New Year’s resolution I ask you to keep.

Paul taught, “This one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before, I press toward the mark for the prize of the high calling of God in Christ Jesus.”

Live to see the miracles of repentance and forgiveness, of trust and divine love that will transform your life today, tomorrow, and forever.

Someone Really Does Understand

Near the end of last year, one of the staff members at the Senior Center gave me a couple of books to read. She felt that they might help me cope with everything going on with Joe. I laid the books on the ottoman in front of the couch and that's where they laid for many, many days. One day I finally got around to opening up one of them and read the page for that date and started bawling like a baby. I read...

"I hesitate to go to a regular gathering for prayer or worship even though the music and messages soothe my soul. It's comforting to be there, but I can't stay. In this safe and tender place, tremendous sadness, too long restrained, breaks loose. I can't hold back the tears. I slip out to my car and can barely see through the wetness to get home.

It's too much for me to stay and try to explain to everyone how tired I am, how much it hurts, how out of control everything seems. But I know it's good for me to go there from time to time. Even when I can't stay, I am cradled for a while by the sacred sounds and sights and silences. I feel the understanding, the hope, the eternal caring. The tears find release there and the grief pours out."

Some really does understand what I experience on a regular basis. Thank you. Many times I have been forced to not attend church because of how Joe was feeling and I was afraid to leave him at home along. Many times we have gone together but been unable to stay for very long because of some emergency which has happened. There have been times when he has had to be assisted by others to walk to the restroom or back out to the car.

On those occasions that I have left him at home tucked securely into bed, I have hurried to the chapel to either sit through Sacrament Meeting or to attend Relief Society. During those times, as I entered the chapel I have felt overwhelmed by a sense of peace and comfort. I knew that I was in a place where I could sit on the back pew or row and just let my tears flow. I knew that I was in a place where my brothers and sisters in the gospel loved me and comforted me. It was like coming home to a family reunion and feeling immeasurable love. I, too, have gone and sat in my car and cried because my heart felt so full and I felt some release from my daily life just listening to the music and sitting in the chapel.

P.S. to It's 2012

I want things to improve so well this year that conversations with friends and family will not start off...

"How's Joe doing"?  I want things to be so improved in both our lives that people will say, "Well, what have you been up to Carol"?

(Note:  It's coincidental that I wrote that earlier.  I was reading a daily excerpt from "Daily Comforts for Caregivers" when I read this..."People are always asking me how my loved one is doing.  I'm glad they care enough to ask.  I wish sometimes they would ask about me as well.  I could use a show of concern.

It seems odd that I'm feeling a little jealous over the attention being given to the person I care for.  I wouldn't want to loved one's shoes.  Yet, although my problems might seem small by comparison, I'm having a difficult time, too.  The problems my loved one experiences are more apparent than mine".

I can honestly say that there have been very few people who have really looked me in the eye and asked me how I am doing and whom I have felt have really meant it.  Don't get me wrong, people are concerned and I am grateful that they do ask about Joe and then me as an afterthought.   However, I am beginning to believe that unless you have truly lived and experienced having to care for someone virtually 24/7, you will never be able to understand.  I never really understood before Joe's problems.  I never really understood what my dad was/is going through with my mom.  I admit that I had even judged my own father harshly at times for things he said or did to my mom.  Now we talk to each other on a regular basis, share common problems and try to solve problems that may come up.  One thing I have over him is that I am so lucky to have a friend who has already gone through this before and she is there as a mentor, a sounding board and someone to give me hugs and "comfort and joy" cookies on really bad days).

It's 2012

I can't believe it's already seven days into the new year.  So much for starting those new plans and resolutions at the beginning of the year.  I'll just justify that by saying I'm doing more contemplating and pondering on how to implement the ones I want to keep and how to rationalize getting rid of the ones that I'm probably going to wimp out on anyway. 

A new year is supposed to be a sign of promise, of hope.  I know that hope won't come from focusing on the uncertain nature of either Joe's or my daily situations.  The truth is, that it is possible to find hope if I trust in the generosity of life - my Heavenly Father, my family, my friends.  Not that I can expect any particular outcome just because I want it.  But I can expect to find help and understanding in every situation I face, now matter how difficult the circumstances may seem, IF I am aware of and ask for that help and understanding.  My dad tells me all the time to "stop denying others their blessings from service.  I don't have to do everything myself". 

At the beginning of the new year I've always tried to determine what my "word of the year" will be.  Let's just take stock of previous years before announcing this year's new word, huh?

2009 - Adjustment - To see what my impending adjustments were anticipated to be, you can go to the article and read about it and see how it all turned out - http://jocarweaver.blogspot.com/2010/01/my-word-for-this-year-is.html.

2010 - Patience - http://jocarweaver.blogspot.com/2011/01/word-of-year-2011.html.  Hmm, still need to work on that one.

2011 - Joy - How'd that work out for me?  By and large not too good at all!  Thank goodness 2011 is over and done with.  Now it's time to move on to my new word for 2012...(drum roll)

And the word is CHANGE! (Please no alluding to President Obama's campaign slogans)!  The definition of change in my situation is...

1. The act, process, or result of altering or modifying (I want at least one hour of quiet time alone in the morning.  I can spend that time reading and/or doing some exercise without having to attend to Joe.  I want to read a book, a magazine, anything!  I want to be able to have Joe tucked into bed by 10:00 each night so that I can finish up my day with at least one hour of quiet time to reflect on the day by blogging or reading).: a change in facial expression.  (I want to smile more and really mean it).

2. The replacing of one thing for another (changing up routines at home, i.e., spending so much time with Joe and not spending alone time for me at the computer.  I want to get back to blogging on a regular basis.  I want to get my book project completed by Christmas this year.; substitution: a change of atmosphere (a new job with benefits that will work with me when Joe has medical commitments).

3. A transformation or transition from one state, condition, or phase to another (I want to continue to stay one step ahead of Joe's needs so that I don't continue to feel like his mother or his maid.  I want to find and experience more love for him).

4. Something different; variety. ( I want to be able to attend a class or go to a meeting or have lunch with a friend without feeling guilty). 

So, let's get back together again at the beginning of 2013 and see if I was fortunate enough to have accomplished what I wanted to this year.