Random Thoughts

- I was driving to work yesterday when I heard the sound of an ambulance siren. I had to pull over to the side of the street to let it pass. As it did, a wave of sadness swept over me and I began to cry. How many times had one made a visit to my home? And then I remembered following an ambulance that last final time. It's these little moments of reality that knock me back a step or two.

- Sleep has once again taken a new turn. I find myself staying up until unbelievable hours of the morning. And, when I finally do force myself into bed, my mind won't shut off and I realize I'm thinking about the oddest things - things I haven't thought about for years or just playing things over and over in my mind. It was on one of these nights that I realized that my relationship with Joe was exactly eight years from the time we met until the time of his death.

- I have come to realize how insensitive people can be sometimes when it comes to death - more exactly the insensitivity of what people have said to me. And the most hurtful things have more than often come from some family members.

- I don't share my feelings with others like I used to. I am trying to move on inwardly when I feel my loss and sorrow. I've done so much reading about grief since Joe's passing. I've done lots of praying. I've been trying to understand how I should be healing and reacting and as far as I can tell, I'm normal?

It's Friday night. I walked into the house tonight and it's almost like I'm standing at one end of a very long, dimly lit hall. The weekend looms like something to be dreaded, yet wanted at the same time. I could most likely call someone and suggest going out to dinner or a movie or have someone come over, but then I've been nice and cheery to people all day, all week. I'm emotionally spent, It's hard during the work week because though my heart still can still break and ache at the most inopportune times, I have to keep my emotions in check...I'm a professional, I'm paid to do a job and honestly the job is what has kept my functioning as a "normal" person.

During the week, I think of all the things I'd like to get down over the weekend. I have my list of things to accomplish, but it can be left on the counter and nothing get checked off. I have things I want to do...apparently later than sooner. I have a burning desire to puts thoughts to paper since my head seems on the verge of over-flowing with things I need, that I want to express. But, I don't get it done. If I do start writing something, I generally become overcome with grief that all I can do is sit and sob.

I want, I need to get on with living a "normal" life. I want, I need to start reading books again. I want, I need to find something to help fill my time, something to make me feel fulfilled. I want, I need something to bring some creativity, some joy back into my life so that it all becomes as natural as breathing.

It's the quietness of the house that gets to me sometimes. The quietness is both a curse and a blessing. There is such a loneliness without Joe. There is the loss of knowing I don't hear his voice and see him. There is the loss of planned daycations, of shared experiences and memories.

When I make it through Friday night and all day Saturday, then Sunday becomes so very difficult. I used to look forward to going to church with Joe. He always looked so good, smelled so wonderful and I loved being able to sit together and hold hands. Now it's sometimes a very painful experience because of those memories.

I know that in time things will become easier. I know that my Heavenly Father does not want me to continue to cry and hurt. Unfortunately, that time has not yet arrived.

I cried myself to sleep last night. That was the first time in quite awhile that that has happened. I think I am evolving into a new phase of my grieving process. I haven't really stopped crying since the day Joe died. I only take vacations from it. I may go for a few days before I really have a good cry or I may have tears well up, but this crying last night was different.

For the last two weekends, I've had the opportunity for some contemplative thinking. It's all been hinging on the downloading of pictures and sorting through paperwork, etc. I had no where that I needed to be the previous weekend, so that gave me two whole days for this to take place and it was mental torture. Mental torture in the sense that it brought out feelings I hadn't had to face in either several weeks or never. This weekend, I'd kept myself so busy in order that this wouldn't be repeated, but those feelings hit me again yesterday.

I miss Joe. Simply said I miss Joe so badly at times. I really missed him last night after crawling into bed after my nightly prayer. This was the first time I'd cried myself to sleep in a long time. The longing to snuggle up behind him or have him come up behind me and cradle my head as he wrapped his arms around me was so very strong last night. And it hurt to know it can't happen anymore and it brings such pain to my heart. I just wish I could cradle his head between my hands and kiss that sweet face and see him smile. Even writing about it now, I'm sitting here with tears running down my face and can hardly swallow because of the lump in my throat.

This is a different type of crying. I think my mind is finally coming to terms and realization that this is a permanent. I originally cried because of the shock, the horror, the nightmarish circumstances. Now I think it's the realization of the permanence of knowing Joe is gone.

Just Let Me Cry

“Just Let Me Cry” by Hilary Weeks

I believe that everything happens for a reason.
We’re not just tossed by the wind,
or left in the hands of fate.
But sometimes life sends a storm that’s unexpected.
And we’re forced to face our deepest pain.
When I feel the heartache begin to pull me under...
I dig my heels in deep,
and I fight to keep my ground.
Still, at times the hurt inside grows stronger.
And there’s nothing I can do but let out...

Just let me cry.
I know it’s hard to see.
But the pain I feel isn’t going away today.
So just let me cry.
Till every tear has fallen.
Don’t ask when and don’t ask why.
Just let me cry.

When I agreed that God could put this heart inside me.
I understood that there would be a chance that it would break.
But I know He knows exactly how I’m feeling...
And I know in time He’ll take the pain away.

But for now...
Just let me cry.
I know it’s hard to see but the pain I feel isn’t going away today.
So, just let me cry.
Till every tear has fallen.
Don’t ask when and don’t ask why.
Just let me cry.

I have felt joy,
the kind that makes my heart want to sing.
And so my tears are not a surrender,
I’ll feel that way again.
But for now...
For this moment...
Just let me cry.
I know it’s hard to see.
But the pain I feel isn’t going away today.
Just let me cry.
Till every tear has fallen.
Don’t ask when and don’t ask why.
Just let me cry

When I listened to this song and read the words, the tears started flowing and kept coming accompanied by deep sobbing. Those sobs that come from deep in the soul – the ones I keep thinking I'm done with.

Will this keep happening forever? Will I ever be done with the grieving? I don’t know. But I hope that each time I weep, I am healing.

So, whenever I need to, please just let me cry.

A Celebration of Life

The Calvary Arrived

Wednesday - The kids arrived around 2:00 a.m. and it was so wonderful seeing them walk into the front door. I think it was at that time that I felt I could truly begin grieving because someone else was there to make decisions. In all honesty, I don't remember much about that Wednesday. I just remember people and food arriving and that's about it. I think that initial preparations were beginning to be made about some type of service for Joe.

The biggest thing I do remember from that day was Corey and I going to the funeral home to make arrangements for Joe. I think I wrote all about that in an earlier blog. It was just such a blessing having the details handled by a worthy member of the church who understood my desires and needs for the burial.

Thursday - This day is a fog also except I do remember going to the Social Security office with Nikki. I'm so glad so was with me so she could explain things to me later. I think it was sometime on this day that one of the most special things for me took place. Since Joe was going to be cremated all of his temple clothing was going to be placed with him since he body could not be dressed due to all of the harvesting of tissue and bones. Since I had no temple clothing for Joe, the stake graciously provided that for us, as well as tissue paper and ribbon. I had asked Corey and Nikki if they would please be the ones to prepare the temple packet for Joe while I observed. They agreed and before they began, we all knelt for a prayer around the ottoman. Then, I sat on the couch and watched them lovingly, reverently, respectfully prepare the packet of clothing. What a beautiful moment in time that was. And then, they took and delivered it to the funeral home.

Friday - Brian, Amy and Rachel, Elaine, Lauren and Claire arrived from Cincinnati, Ohio after traveling since Tuesday. They took me to lunch which was so nice as it had been about 7 years since I had seen them. In fact, Claire was not even born at that time. Joe and I had stopped by to visit with them when we were on our honeymoon in Indiana where they lived at the time.

Lunch and the wonderful company was so nice. I was so glad that Brian had come and brought the family although I had tried to dissuade them. I knew I wasn't going planning a funeral program at that time and knowing the time and expense it would take for them to come, I didn't want to cause them any inconvenience. I'd spoken to Brian many times on the phone over the course of my marriage and had thoroughly enjoyed doing so, but Joe and Brian had a very strained relationship and spoke very little. Very little until the last few months of Joe's life. I don't know exactly what happened years ago, but my heart always hurt because they were missing out on the opportunity of being able to have a great relationship. I do know that Joe was so very sorry that he and Brian didn't have a great father/son camaraderie. So, I was so happy when Brian and his entire family showed up. They were a great comfort to me and it was wonderful for me to observe some healing between my kids and Brian and hopefully for Brian a better sense of hearing and seeing how much his father was loved by so many people. (We've never heard anything else from Joe's other son, Jason, to this day).

The most special event of the day was when Corey and Brian both went to the funeral home to pick up the box of Joe's ashes. I thought it was quite appropriate that both of my sons went to do one last act of love for Joe. It was so very strange to have Joe returned home in a rectangular black box. He now sits on a bookcase shelf in the living room now.

I genuinely love Brian. He reminds me so much of his father, with his looks, his voice and his temperment.

Journey Of Grief - Guilt

The experts say...When someone you care about dies, it's natural to consider the "if-only's" or "what-if''s". You may also feel guilty if a part of you feels relief - common after extended illnesses or caregiving. While these feelings of guild or regret are natural, they are sometimes not logical to those around you. But remember - thinking is logical; feeling is not.

I went through my own list of "if-only's" and "what-if's". I still think of them from time to time, but have found a certain amount of relief and understanding since I attended the temple last month. I felt so strongly that I needed to be in the temple as soon as possible for so many reasons. Before attending the temple, I felt it very necessary to fast for answers and strength that I knew would only come from temple attendance. I didn't know exactly what I realistically wanted as an answer to my prayers until a conversation with Derek that morning after he was told I wouldn't be eating chocolate chip pancakes that morning.

Derek: "Grandma why are you fasting?"
Me: "Well, let me think about that".
And Derek was off playing before I answered. But, it did make me think of my reason which I felt was - I wanted to be forgiven of the things I felt guilty for regarding Joe. I wanted forgiveness for the way I treated him at times. I wanted forgiveness for the nasty names I sometimes called him. I wanted forgiveness for the inpatience I felt sometimes. I wanted forgiveness for not treating him with more love. And the list went on and on. Those feelings were being compounded with all of the "if-only's" and "what-if's".

Those "if-only's" and "what-if's" included things like:

• what if we'd been at our home instead of the Sleep Inn? The EMT's would have gotten to us faster.
• what if they'd gotten to us faster? Would that have made a difference in Joe's survival?
• what if we hadn't gone away for the weekend? Did being out in the heat make a difference in him having a heart attack?
• had Joe called out before I heard him? Had I not heard him if he did?
• what if I hadn't taken him off life support? Would he have recovered afterall?
• did I give him his insulin the evening before? Did that contribute to the heart attack?
• what if I'd taken Joe to the doctor earlier about his atrial fibrillation? Did that hasten the heart attack or cause it?
• and the biggest "if-only" and "what-if'" of all for me, was "what if" I hadn't taken B.J. outside to use the bathroom? "What if" I'd come back into the hotel room just a couple of minutes earlier"? "What if" I'd done CPR on Joe? I was trained, but never got the opportunity to use it.

And the list can and did go on and on and on. I'd lay in bed trying to sleep, but never slept well for weeks. Part of my healing from these questions came when Cordell came to the house one evening and while sitting on the couch, he testified to me that he knew that when he gave Joe his final blessing that it was his time to go - that he would not recover. Cordell told me that he knew it was Joe's time and he was being called home. He told me that even if Joe had had the heart attack on the very floor of the emergency room, he still would not have survived. I finally received peace though when I went to the temple and received an assurance in my heart that I needed to put all this aside. That I'd done all that I could and in the circumstances I was in during those stressful times.

No one ever know what it's like or will ever understand what it's like to make a decision where someone's life literally hangs in your hands unless you actually have to do so.

I was hoping against hope that because Joe had been given a priesthood blessing and he'd always pulled through before, that my faith would be strong enough that he would be able to be rescitated and eventually go home with me. I saw that hope slipping by minute by minute until the decision was put in my hands. How do you let someone that you love slip away? How do you know if you are making the right decision? How do you know that some type of miracle won't take place?

I only know that when I gave the "okay" to have the life support removed from him, that it was only a matter of minutes until he took his last breath and stopped breathing. And, I will always remember how at peace Joe looked.

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If I Only Had Today"

It seems like I've watched a million sunsets
And stared at a thousand full moons.
Sometimes it feels like I've been here forever
And sometimes it all feels brand new.
I could never count the heartbeats
From the day I was born until now.
But not a single one goes unnoticed
By Him who breathes life in me somehow.
But if there were no more tomorrows
If I knew that I could not stay.
I know how I'd spend every moment
If only I had today.

I'd hold you and listen
And I'd let the dishes sit in the sink.
I'd tell you I loved you over and over
And for once I'd just let the phone ring.
The I'd remind you of forever
And how our love would never change.
If I only had today.

I'd wake up before the sun did
And I'd watch as you quietly sleep.
I'd pray for time to move slowly
Knowing the moment won't keep.
All the gifts that Heaven has given
Every blessing that's come my way.
Wouldn't mean anything without you.

So if I only had today.

I'd hold you and listen
I'd memorize every detail of you face.
I'd tell you I loved you over and over
I wouldn't let excuses get in the way.
Then I'd remind you of forever
And how our love would never change.
If I only had today.

Last Daycation - Day 4

This day began with Joe going to have breakfast with Roger and Connie while I showered and packed up our belongings.

We then kissed and hugged all goodbye and headed back to Casper where we passed this interesting car on the interstate.

One of the most important archaeological sites of the Late-Prehistoric Plains Indians. Discovered during the construction of Highway I-90 in the early 1970's, the Vore site is a natural sinkhole that was used as a bison trap from about 1500 to 1800 A.D.

Buffalo were driven over the edge of the sink hole as a method for the Native American tribes to procure the large quantities of meat and hides needed to survive the harsh prairie winters.

After getting off the interstate near Gillette, we came across a large herd of buffalo. The 65,000 acres which comprise Durham Ranch has sustained bison since the early 1960’s. The original bison at the Durham ranch came directly from Yellowstone National Park, making this herd very unique indeed.

Durham Ranch presently has about 2,500 purebred American Bison with 1,200 breeder cows. The cows average 1,050 pounds and show an annual calf crop of 90 to 95 percent. The bulls weigh around 1,800 to more than 2,000 pounds at 5 to 6 years of age. The calves are born in April and May, weighing about sixty pounds

We pulled over by the side of the road and leaned up against the car and watched the herd move for probably 20-25 minutes. They were so fascinating to watch, especially the babies.

And, then we headed back to Casper where I checked Joe and B.J. back into the hotel since we were not going to be able to get back into our home until the next day.

I went to the house, put furniture back into place, straightened up and vacuumed the carpet for a couple of hours. Then I stopped by and picked up hamburgers and a Frostie for Joe. We were both so tired that I don't even remember that we hugged or kissed each other, but rather just fell asleep in our individual beds until the nightmare began the next morning at 4:30 a.m.

Last Daycation - Day 3

Last Daycation - Day 2

We got up Saturday morning and headed towards Custer State Park for a day of exploring. First we went through Wind Cave National Park and the first thing we encountered were buffalo.

Joe was in awe of the huge fresh buffalo patty

One time we were completely surrounded by a herd of buffalo with lots of babies...

 

We drove high into the clouds...

When you drive through this tunnel, Mt. Rushmore is framed by the stone.

Last Daycation - Day 1

I am trying to learn death's lessons and surely one of the things I've learned is that life is a gift. Our last weekend together - our last daycation together - was such a gift in so many, many ways.

Joe and I left for South Dakota on May 25th. We were going to spend the weekend in the Black Hills of South Dakota exploring and then head even further east to Badlands National Park and Wall Drug. These two places had been on our list to visit since our move to Wyoming,

He went to dialysis that morning and I went to work and when his session was complete, we headed north of what would be our last "daycation" together. (Only a few days before we left did we learn that Roger and Connie would also be in that same area and we might have the opportunity of meeting up with them. They were supposed to come stay at our home the following Monday, but this might give us the chance to spend more time with them. Roger was Joe's best friend for the last million years and Connie is Roger's girlfriend for the last many years).

Anyway Joe and I drove to Hot Springs, South Dakota that afternoon. It was about 2 1/2 hours from our home and a lovely old, little town. We stayed in a cute little, "mom and pop" motel and ate at one of the local restaurants having prime rib and all the fixings for $10.95 each. What a deal and what a meal for us. Our purpose for staying here was to go visit the Wooly Mammoth Site the next morning. In 1974, a construction worker, George Hanson, unearthed unusual bones while the area was being prepared for a new subdivision.

The weather looked quite ominous at times, but we always seemed to be either in front of it or it had already passed over us

Made it South Dakota. This is Joe's response to "smile". The silver object around his neck was a device connected with his hearing aids. It could cut out background noise and also worked as a volume control.

We talked about how Derek would love this train and the others we saw at Siding 7.

One of the old buildings in Hot Springs...

After dinner we drove around this picturesque town and decided that there was just too much to see and that we'd come back another weekend to explore the area. Called Minnekahta (warm waters) by the original white settlers in 1879, the town's name was changed to Hot Springs in 1886. Earlier, the Lakota and the Cheyenne Indian tribes fought for control of the natural warm waters. Legends tell of a hostile encounter waged in the hills high above the gurgling springs on a peak called Battle Mountain.

A Messenger arrived from the Great West with news of a wonderful water which, he said, had been touched by the finger of the Great Spirit and would cure all manner of diseases. Indians came to these springs by the thousands.

After a lapse of more than 200 years, the Cheyenne took possession of the springs and built an immense tipi city covering hundreds of acres.

In the following years, the Sioux migrated west and disputed the ownership of the springs. This culminated in a fierce conflict in about 1869, the memory of which is preserved in the name of the eminence to the east, Battle Mountain, where the besieged Cheyenne established fortifications. The Sioux won the battle and possession of the springs which they called wi-wi-la-kah-to (Springs - hot). They called the area Minnekahta (Water - hot) and termed the Black Hills a great "Medicine Home".

Battle Mountain History After the Battle Mountain fight, tradition says the Sioux and Cheyenne agreed to allow the springs to be a health sanctuary to give their sick and lame the benefit of the healing waters. Around 1880, pioneers began to settle the area.

My mind is and has been so full of thoughts over the course of these last several weeks. I wish I'd had the strength of mind and body to have written the many things that have crossed through my mind in hopes that one day I could sort everything out and have a better understanding of what I've experienced. Unfortunately, I was not able to do so. This writing and those before and those to come after pertaining to Joe's death are the best I can do to make up for my lack of recording my thoughts. It's very important to me that I do this. It seems it's the only way that I can come to some way to understand what has happened. There will be a randomness to the writings.

I have laid in bed wishing and praying for sleep and some type of rest, but it has been so elusive on many occasions. With all the endless supply of thoughts, I find myself getting up at the oddest of hours of the night looking for some thing that comes into my mind. It may be a picture, a piece of paper which could contain something Joe wrote to me, it's been looking for something on the Internet to listen to such as a particular song, or a talk. I've been looking for answers to quell the raging tsunami of thoughts that just won't stop. Many times I leave my office looking like a robber has gone through drawers and files searching for hidden treasure and left with a mess in his wake.

I am searching for answers and comfort.

The Grief Journey - Anxiety/Physical Symptoms

The experts say that the next stage of grieving is anxiety. This is when your head and heart begin to miss the person who died, when you may naturally feel anxious. You may feel anxious about everyday realities, such as work and finances. You may even panic as you think through the repercussions of this death.

Boy did the experts have it right. I remember having a panic attack one evening when the kids were here. I believe it was at the end of the day after Nikki and I had gone to the Social Security office to begin processing my widow's benefits paperwork. That evening I went into my office and sat down and started putting together a listing of monthly expenses and what my new income would be. I panicked! Would I be able to stay in our home? Would I make enough money at my job to make my monthly expenses? Would I have to get another job or a different job to just survive every month? It seemed as though my life was going to become even much harder. The kids did make a deal with Leonard Landlord though and got my rent reduced by $200 per month, so that was definitely going to help.

Experts also say that you may also experience physiological changes as part of the grief process. Among the most common physical responses to loss are trouble with sleeping and low energy. You may have trouble geeting to sleep or you may wake up early in the morning and have trouble getting back to sleep. You may also find yourself feeling more tired than usual.

Someone definitely knew what they were talking about. For about the first six weeks I went to bed very, very early in the morning in the wee hours, but woke up at 3:00 a.m. almost on the dot every morning. Going to bed and trying to sleep was almost an impossibility because my mind wouldn't turn off with all the thoughts that just kept coming. And, I was missing being able to crawl into bed and snuggle up next to Joe.

Aftermath - Tuesday Into Wednesday

No one will ever know how it felt for me to leave that hospital room and leave Joe there. No one will ever know because they didn't live with Joe, they weren't married to Joe and they didn't love Joe they way I do. I've never lost a parent, but I have lost people who meant a great deal to me such as Aunt Rachel and Mr. Bill and my grandparents. But those losses to not even begin to match how I felt when Joe died.

He was my best friend, my lover, my confidant, the man who saved my life and made me understand what true love meant. It was so hard to just go off and leave him lying in that hospital bed looking like he was just napping and knowing that we would never have another conversation together, that he would never make me laugh again and that I would never have his face in my hands again to cup and kiss. At least not here on this earth and it might be a very long time before I ever saw him.

I don't remember how I got home. I think I do remember Marla taking me back to the hotel so that I could gather my things, including B.J. and then driving myself home. I do remember that after that point, I was never left alone. There was always someone at the house and sometimes multiple peoples. It stayed that way even until the kids arrived about 2:00 a.m. the next morning. Food was brought in and attempts made for me to eat, but I only remember it all just being a blur and living in what felt like a very, very bad dream. The happiest part of the nightmare was when the kids finally arrived. It was such a relief just to sit back and watch them take over.

Later that day, Corey and I went to the funeral home to make the arrangements for Joe. Joe and I had already decided that cremation was going to take place for a couple of reasons - 1) financially it was much better and since I was never able to secure any type of life insurance for Joe because of his past medical history, finances were going to be a issue. 2) I most likely won't remain in Casper all the remaining part of my life and I didn't feel comfortable having Joe buried here and me no longer in the city. The arrangements went well and it certainly was a comfort having Corey there with me. I was told that Joe's body had been returned from Denver where he had been sent for the harvesting of vital skin tissue.

I pray for comfort from pain, Father, not the lessening of the love that causes it.

11:04 A.M.

Joe died at 11:04 a.m. on May 29th, 2012.

After giving the okay to remove him from life support, Joe peacefully stopped breathing after a very short period of time.

I remember telling him that entire morning how much I loved him. I remember saying so many times, "please, please, please let this just be a bad dream." "Please let him open his eyes. Please let me hear him say something to me." But he never did. I was told by his nurse, Michael, to keep talking to him because it's thought that hearing is the last thing to go and I wanted Joe to know how much I loved him. And I did so very, very much.

I don't remember who all was in the room when he died. I do remember Connie and Roger and Sadie and the Bishop and Cordell. I do remember the awful grief and pain I felt. I felt as though my heart was literally breaking knowing that Joe wouldn't be coming home with me this time. That this time was his last time he'd ever be in the hospital, that he would no longer be with me.

I do remember everyone all leaving the room. I was alone except for Michael who arranged a pillow under Joe's arm so that the blood wouldn't pool into his fingers and he moved the bed rails so that I could be closer to him. Then I was all alone with Joe or so I thought until a few weeks later when I discovered this picture on my telephone.

When I saw it, I began to cry because it brought back such a special memory of holding Joe's hand for the last time. I just didn't know where it came from. Had I taken it? I didn't remember it. When I called Marla the day I found it, she told me that she was the one who'd taken it. She'd done a similar picture after her husband had died and got a lot of comfort for it. What a special gift for me to have and remember.

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Sometime during all this confusion I did speak with Corey and they were on their way. I also spoke with Brian and his family got ready and began their drive from Ohio. I called Roger and Connie, who happened to be two hours away and they came.

I also had a visit from the organ and tissue donor person and immediately signed paperwork granting them the full use of whatever they could harvest from Joe that would be of possible value to someone else. That was the easiest decision of all to make since we'd already discussed him being an organ donor.

The Journey of Grief - Part 2

The experts say...After the death of someone loved, you may feel a sense of ongoing confusion. It's like being in the middle of a wild, rushing river where you can't get ahold of anything. Disconnected thought race through your mind and you may be unable to complete any tasks.

When I arrived at the hospital, I was taken to a chair outside of the treatment room unable to see Joe immediately. According to my cell phone log, I called Marla at 5:00 a.m. and asked her to come - telling her that Joe was dying. She came and she held my hand and cradled me and loved me. Somewhere, sometime, she had contacted the Bishop and he and Cordell showed up. When I did see Joe, he was wired and plugged up to so many, many machines and unconscious. He was able to have a final priesthood blessing given to him by Cordell who was our friend, our home teacher and someone who dearly loved Joe and did anything and everything I'd ever asked him to do to help with Joe. I remember sitting next to Marla, holding hands, while the blessing was given. I heard nothing of it though due to the noises in his room and my crying. I just knew though that Joe was truly in God's hands at this point and I knew it was very, very serious. I just knew that my mind could not and did not want to comprehend what was happening. But, I knew Joe was in good hands and that I was too.

Eventually he was moved to the ICU. I sat next to his bed and held his hand. When I kissed it one time, his head came up and his eyes opened and I just knew the priesthood blessing had healed him. But sadly, I was informed it was not a sign of healing, but rather his brain starving for air and this was something like a muscle reflex. They eventually became so frequent and detrimental to him that a body paralyzing medication was given.

It was originally thought that perhaps there might be some recovery and discussion was spoken about putting him into a cooling coma for 24 hours to determine if his brain would be functional. However, just before that procedure was put into place, a mini miracle took place. His cardiologist - Dr. Novick, his neurologist - Dr. Wheeler and his nephrologist - Dr. Cotant all happened to have been on the same floor, at the same time and all heard about Joe and came to check on him. Dr. Novick ran a program tape connected with Joe's pacemaker to determine how long he'd been without oxygen and compare it with the 911 records. It was determined that Joe had died approximately 1 minute before I entered the room and that he'd gone for several minutes without oxygen. Therefore, if he did happen to regain consciousness, he would in all likelihood be in a vegetative state and unable to care for himself.

So, a consultation took place between these three doctors who had cared for Joe many times in the last two years, as well as the admitting doctor. They then came to me and told me that there recommendation would be to take him off life support. I looked at each one of them in the eye and asked them that if that was their husband or their father lying there would they do that and each one nodded or said yes.

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I came to realize on that day how fortunate the mini-miracle was regarding the doctors. But I also remembered a saying that I'd heard many years ago which is...

There is no such thing as coincidence. It's just God's way of remaining anonymous.

The Journey of Grief

Joe died. He was my eternal companion, the person whom I shared my life with, my best friend and now I am beginning a journey that is sometimes frightening, very painful and lonely. I have lost a part of myself. I'm sure that in time I will "feel better." But first, I know I must express my grief and also mourn. I never realized there was a difference before. It seems strange with all the things we are required to learn and know in life, that society avoids educating us about grief and mourning. The difference is...Grief is the feeling that one has typically due to a loss, while mourning is the process/action one takes to deal with the loss. Grief is within ones self and mourning is displayed outward. I know that I also need to mourn that when I need to cry, I will do so.

I am grieving for the way my life used to be with Joe and also trying to move forward. I realize that my grief is unique because no one else had the same relationship that I had with Joe. My grief is influenced by the circumstances surrounding his sudden death. I am the only one who was in that hotel room that made the decisions that I made to try and save his life. His life was in my hands and I still couldn't save him or offer comfort to him and I'm the one who is trying to cope with that each and every day!

One of the first emotions associated with grief is shock. The experts on grief say that a person may feel dazed and stunned, expecially durint the time immediately following the death. This feeling is nature's way of protecting you from and over-whelming reality. You may experience heart palitations, queasiness, stomach pains or dizziness. You may also find yourself crying hysterically or screaming angrily. These behaviors help you survive during this extraordinarily difficult time. Translated this means that I felt like I was living a bad dream, a nightmare that I was not been able to wake up from. It came across as being something so surreal that it made me feel as though it was an outer body experience. That all began on May 29, 2012 at 4:30 a.m.

We were staying at the Sleep Inn in Casper. Our home had been flooded by a leaking water heater and the insurance company had allowed us to stay in a hotel. We'd come home from a wonderful weekend in the Black Hills of South Dakota and both of us had gone to sleep in our own separate queen-sized beds, with B.J. The Dog sleeping with Joe.

I remember Joe waking me up around 12:30 a.m. when he went to the bathroom - making noise, leaving the bathroom light on, etc. I got up and stuck some earplugs in my ears so that I could sleep as I had to go to work in a few hours and he would be going to dialysis. I went back to sleep and around 4:30 a.m., I was suddenly awakened when I heard Joe yelling and yelling and yelling. I took the earplugs out of my ears and yelled to him, "Joe, wake up! Wake up"! There were many times Joe would have nightmares and he would thrash around and yell and I would have to wake him up. However, this time he yelled "I'm not asleep! I can't get off the bed"! I told him to calm down and lower his voice before he woke everyone up and I'd help him get up. I pulled him to the side of the bed and sat him up. That's when I noticed him holding his chest and breathing as he'd done in the past when he'd had pneumonia. I even said to him that I thought I needed to take him to the emergency room because it sounded has though he had it again. He told me he just wanted to get to the bathroom and so I helped him walk there as he was very, very unsteady. I sat him on the toilet and since B.J. was needing to go outside, I told Joe I'd be right back.

In just a few minutes, B.J. and I came back into the hotel and when I opened up the room door, there was Joe lying collapsed halfway between the bathroom and the space right by the door. His "diaper" was halfway pulled up and all the items on the bathroom shelf had been swiped off onto the floor. He was not responsive in any way. I thought it might be low blood sugar, but hurried and called 911 immediately. The operator would not let me go to Joe. The phone cord only stretched so far and I kept screaming out Joe's name. The only help to Joe at this time was that B.J. had gone and laid down next to Joe.

I don't know how the medical personnel got into the room - by me or the hotel staff, I only know that suddenly the room was filled with people. I sat on the end of Joe's bed and remember holding my hands over my face and rocking back and forth praying, "Oh, God, oh God, oh God". I told them he was diabetic, to check his blood sugar and they told me "No ma'am, it's his heart". Joe had no pulse. But, the EMT's had started CPR as soon as they could and administered medications. How could it have been his heart! Joe had just done a routine follow-up on April 9th with Dr. Novick on his pacemaker and then had had an echo cardiogram done two days later. Another appointment was on April 23rd to get the results of the echo was showed his heart fine except for some thickness in his valves due to his high blood pressure. Another appointment with another cardiologist was on May 1st because it had been discovered that Joe had atrial fibrillation which meant his heart rate was irregular. Medication had not regulated it so an out patient procedure known as a TEE/Cardioversion was scheduled for May 23rd - two days before we were leaving for South Dakota. The procedure took place - they stopped his heart and it took three times shocking it for it to return to normal rhythm. However, it was discovered it had lapsed back into afib by dialysis the next morning. New medication would be tried once again.

So, as I'm sitting on the bed one of the EMT's turns to me and asks "Do you want us to stop?" I yelled back to them "No, no, no!" I sat on that bed and watched them struggle to save Joe's life. I saw them shock him. I saw things I don't ever want to experience ever again. They finally did get a pulse and took him to the hospital. A police officer drove me and the hotel took care of B.J.

Where To Begin?

Where to begin? Where to begin recording all the things that keep going in and out of my mind that I so desperately want to remember? There's just so much to say. I am so overwhelmed by my loss and grief at times that I feel the only way I can move on is "putting pen to paper", but it's so, so very hard. I'm sitting here right now with a box of tissues to wipe my eyes. I'm not ashamed of the crying because I'm hoping it helps release some of my pain. I had no idea I could have so many tears. And, when will I lose this lump in my throat that seems to accompany those tears and makes it so difficult to sorrow?

It's been almost three months since Joe's death. Some days it seems like forever and others it's like it happened yesterday. No matter what changes I have ever gone through in my life whether loss of jobs, the birth of Corey, loss of grandparents and other family members, sickness, divorce or whatever the change might have been, the greatest change has been the loss of Joe. It's been a painful event and sometimes I have felt as though I've not had the energy or desire to move on. It's very frightening at times, as well as overwhelming and sometimes lonely. That last sentence really helps me understand how my life changed since being married to Joe. I used to think nothing about hopping on a plane, flying and/or driving to some unknown city in another state all by myself and not feeling any type of concern about being by myself or frightened about the prospect of being alone. Eight years with Joe changed all that because we were a couple and did so much together and now he's gone.

One Month

It's been exactly one month since Joe died or passed away or passed. Whatever word you use, he's gone and missing in my life. It seems really impossible that that amount of time has already come and gone. That means I've gone an entire month without seeing his face, hugging his neck, kissing his lips or snuggling up behind him when I climbed into bed. It really hurts my heart when I put it into that type of perspective. I'm learning that it really is much easier "taking it one day at a time". Even when those days have been expanded to "it's been one week", "it's been two weeks", etc. that hadn't and didn't hit me as hard as realizing that a full month has passed.

Some things remain as they did at the beginning of this counted month. I still cry every night while saying my final prayer of the day. I still can't sleep on Joe's side of the bed - each morning I technically make only half a bed. I still go to bed late and when I do, I lie awake thinking or remembering so many things about Joe. I miss the sound of his voice. I miss his sweet last puckered kiss of the night. I miss wrapping my arm around his chest and falling asleep. I still wake up each morning around 3:00 a.m. for some strange reason - it doesn't matter if I've taken something to try and help me sleep or if I've just climbed into bed a scant few hours before.

I'm not going to lie - being left behind by someone you love sucks. It matters not that I understand the Plan of Salvation and that I have faith in the things I've been taught about being reunited with my loved one one day. I'm human. I loved Joe and I am now without him. My chest has physically hurt from the pain I feel in my heart. There is a loneliness in my soul knowing there are no more conversations or experiences to be shared with him. There are no more dumb jokes or useless trivia to make me laugh with him. Things that I took forgranted I wish I hadn't. I've said I wish I could at least have a rewind on the last full day we had together even knowing what the outcome would be. Oh how I'd love that chance - not to change everything, but just to be more loving and attentive in those last few hours.

What a blessing it would be just to be able to hold that sweet man's face in my hands one more time. I'd love to look into his beautiful blue eyes, tell him how much I love him and get one last kiss.

It's been exactly one month since Joe died, but I've made it...one day at a time and tomorrow will be another one of those days.

The following posts are being added after Joe's death...

Who Do You Call?

Upon my return home this morning and prior to trying to take a short nap, I had phone calls to make:

• Marla - so she could call the Bishop and Pat;
• CATC - so they wouldn't plan on picking Joe up today for dialysis and the return trip;
• The kidney center so they wouldn't be expecting Joe;
• The kidney center again to make sure that Joe's yearly evaluation was still taking place - it was and I did attend;
• The Senior Center so they wouldn't be expecting Joe tomorrow;
• The adult daycare so they wouldn't be expecting Joe today;
• Dad to let him know what was going on with Joe;
• The neurologist office so his appointment for tomorrow afternoon was cancelled; and
• The kids so they knew what was going on.

And, then I went to sleep for a couple of hours before getting ready and going to work.

The Last Day Of January 2012

Here it is the last day of January 2012.  What a month and there is still a few hours left so I'm warily optimistic at this time that we will end this month on a high note.

During this month, we have made three trips to the emergency room.  1.  For his unusual behavior; 2.  For his constant drop in his blood pressure; and 3.  finding out he has pneumonia.

How did No. 3 sneak in on me?  This is Tuesday.  Sunday night while sleeping with Joe, I noticed some wheezing in his throat, but didn't get excited about it.  I notice that I wheeze every once in a while, but nothing comes of it. 

Monday he went to the Senior Center, did his normal routine, I picked him up and took him to physical therapy.  Both Jeff and I noticed how worn out he appeared to be.  Jeff even told him he couldn't spend all day at the Center doing exercises and then come to therapy and expect to have a great workout.  We went home, I fixed dinner and Joe almost immediately went to bed - this was around 7:00.  He was so tired.  I went to bed around 9:30 p.m. as I could no longer stay awake.  We'd both had a bad night of interrupted sleep Sunday evening and I wanted to catch up on some lost sleep.

Around 12:15 a.m. I heard Joe calling "help, help, help, help" and I went into the bedroom where I found him with a glazed look on his face, he was "lost" sitting on the bed, flushed in his face and gurgling very loudly.  He wanted to get to the bathroom, but had no strength and couldn't walk on his own.  I helped him to the bathroom where I took his temperature and it showed 100 degrees - no more since he couldn't keep him mouth closed to breath.  I decided it was time for another trip to the emergency room and quickly.

I had to get both of us dressed and somehow managed to get Joe out the door and into the car.  When we were halfway to the hospital, he announced he was going to throw up and he did before I could stop the car and open up the door.  Thank goodness it was only on himself.  When we arrived at the ER, he was taken back immediately and the tests began. 

It was determined that he has pneumonia and most likely he also aspirated in his left lung when he threw up. He was finally admitted to the hospital after about 5 hours in the ER.

Return of fluid?

I took Joe to his balance therapy session yesterday, but we didn't stay.  When we arrived, I mentioned to the therapist what had transpired with Joe yesterday at his appointment.  Jeff decided he wanted to take Joe's blood pressure before beginning and see how he was doing.  Joe was very unsteady on his feet, had an irregular heart rate and even had slight tremors in his hands.  Based on those things, Jeff decided to not work with Joe yesterday for fear of something happening.

Dr. Fox's office called back this morning and told me they'd set up an appointment for Joe with the neurologist next week.

This morning I called the dialysis center to make them aware of what's been happening with Joe.  They called just a few minutes ago to let me know that he'd had another episode and they needed to know what new meds Joe was on and they were calling Dr. Neff.

I JUST WISH SOMEONE WOULD FIGURE OUT WHAT'S GOING ON WITH JOE!
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Update:  I was told by Joe's kidney doctor to eliminate the Tekturna medication.

Burden of Kidney Disease

I just finished reading some paperwork that I found in Joe's dialysis bag and it was quick an eyeopener for me.  Apparently he recently took part in an individual survey regarding his feelings about dialysis and renal failure. 

There was a physical component summary (PCS) score that reports how you feel about your physical health.  In the survey, he was asked if he could do things like climb stairs, move a table, or push a vacuum.  The average PCS score for others on dialysis in the U.S. who are male, about his age and have diabetes is 34.3.  His score was 41.2 which means that he may be as likely to need hospital care as most people on dialysis.  And, he may live about as long as others like himself whose scores are in this range.

Then there was the mental component summary (MCS) which reports how he feels about his mental and emotional health.  He was asked in the survey, whether he felt calm, had enough energy or felt blue.  The average MCS score for others on dialysis in the U.S. who are male, about his age and have diabetes is 50.5.  His score was 46.9 which means that he may be as likely to need hospital care as most people on dialysis.  And, he may live about as long as others like himself whose scores are in this range.

The shocking and stunning question on the survey was the Burden of Kidney Disease which measures his feelings about how much kidney disease affects his life.  He was asked if kidney disease takes up too much time, frustrates him or makes him feel like a burden on his family or others.  The average score for this one is 45.2.  His score was 6.2!  This means that he feels he is less able to deal with the burdens of kidney disease and treatment than many others on dialysis.

Questions I would have about this though would include (keeping in mind that all of his other scores were average), did he really understand and hear the questions that he was answering?  Where these questions asked to him?  I do know that yes he does have problem handling his bieng on dialysis.  We've talked about it at length many, many times.  That's one of the reasons he gets upset with me is that I don't understand it as well as he wishes I could/would.  Joe does need someone to call when he gets frustrated.  He doesn't have anyone.  I do and am fortunate about that. 

Speed Bump

Things have still been going well for Joe and me.  However, it seemed as though we'd hit a little speed bump this morning.  His cardiologist's office called yesterday for me to bring him in for his bi-yearly pacemaker checkup.  He missed it in November due to his hospitalization and there was a cancellation, so we hopped on it.

It was a strange morning - thank goodness for a great night sleep for both of us - Joe in our bed and me out in the living room on the mattress.  Joe got his shower and when I went to get into the shower, the shower mat was covered with poop.  I asked him if he'd had an accident in the tub which was fine for me - better there than on the bathroom floor.  He said "no", he thought maybe I'd done it after my shower yesterday.  It wasn't me.  I can assure you of that.  Then he said maybe it had been B.J. did it while we were gone yesterday.  Hmmm, that still didn't make sense to me for two reasons...1.  If it had been B.J., I'm quite sure that I would have smelled it sometime during the course of using the toilet.  My sense of smell is pretty darn good and I picked up on the strange odor the minute I walked into the bathroom this morning.  2.  If it had been B.J.  the water from Joe's shower should have washed it down the drain, I would think.  Anyway, I wound up taking the shower hose and with HOT water I washed everything off the mat and removed the mat and no more poop.  Not sterile, but would work in a pinch until further bleaching can take place.  I did leave the bathroom door and shower curtain open so that I can see if it was indeed B.J. doing this.

We got out the door right on schedule.  The visit at the doctor's office then took another weird turn.  The nurse took Joe's blood pressure four times - two standing, two sitting.  His pressure was 190 something over something.  Hmmm, kinda high she says.  While plugged up and waiting for the doctor, Joe tended to drift off and on and lean way over on his right side.  I was ready to catch him if he fell. The testing on his pacemaker takes place, he has problems standing while dressing.  In fact, I have my hand on his back so that he doesn't fall over backwards.  We start walking down the hall and then he starts wobbling and knees bouncing.  (Same symptoms as this past Sunday, same as when the Senior Center called me last Monday, same as when I went to pick him up from dialysis on Saturday, same as he did after physical therapy on Tuesday and the same as one other day last week).

The nurses had him sit down, they took his blood pressure again.  100 over ?, then 90 over ?, then 80/43.  They made him sit for quite awhile until he was able to walk once again.  The doctor advised me to switch one of his meds from breakfast to bedtime. 

I called the daycare center to check on Joe and see if he was still doing okay.  The nurse said other than leaning to the right when walking, he was doing fine.  Is the leaning, the leg loss the beginning signs of the return of the fluid on his brain?  Did he actually have a bowel movement in the shower this morning and was not aware of it?  Only time will tell.
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This morning was one of those days when I feel like my hands are tied and I'm feeling as though I'm drowning.  I should have been to work at 8:00 a.m., but since Joe's appointment was at 8:30 a.m. that meant I was missing work.  Then his appointment stretched into almost 2 1/2 hours due to everything that happened.  And, because he changed his mind and wanted to go to the daycare, he was missing out on eating their lunch.  This meant I had to go by and get him something.  That took more time out of the way and by the time I made it to work at around 11:00 a.m., I had now missed three hours of work.  And, I will be leaving around 4:00 p.m. to take him to physical therapy.  Those hours add up over the course of my two week paychecks and add stress to paying for the bills.  This is the kind of thing I try to keep from sharing with Joe as he already feels responsible for some of my problems.

Messing In My Backyard

I really don't like it when people think they have to stick their nose into our personal business.  Case in point, the dialysis social worker called today to "see how things are going".  She was fishing.  I don't know what she was fishing for, but she was looking for something.  I know that she had a long talk with Joe today.  Did she tell me?  No.  But, I know that she did because one of my very good friends saw it happening.

Do I know what Joe told her?  Nope, simply because she didn't/won't/couldn't/can't tell me what he says to her.  How is it she can't tell me what he says, but she can come talk to me about us?  She did say, however, that Joe mentioned that an appointment is being set up for counseling.  She thinks that's a good idea for BOTH of us to go.  She doesn't know that it's only ONE of us going - at least for the time being. 

I'm sure she means well, but to me it's only stirring the pot when she talks to Joe.  After all, this is a man who loses touch with reality many times.  If she can come asking me questions about us, why can't we have a discussion about Joe so that my side of the story, probably the true side of the story, can be heard?

I have two words for her...BUTT OUT!  If I can't be a part of the other side of the conversation, please don't come fishing in my pond.

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1/26/2012 - Additional questions as to motive of social worker after thinking on this a couple of days. 

• Is she trying to be a marriage counselor for us?  If she is, she still needs to butt out.  It's almost like she's causing more problems asking Joe how it's going between the two of us.
• Is she trying to can information from me so that she can make a determination on something?  Is she thinking that Joe might still be suicidal in some way and she's gathering info?
• Is she trying to get my side of the story and see if it matches up with Joe's?
• Does she truly realize Joe's mental capacity?  I'd love to ask her this..."If you were involved in an accident and Joe was the only witness that stood between you and the truth, would you want him to be your witness"?

My Little Piece Of Heaven On Earth

I picked my battles this last week and there was no war.  The change in our home was incredible - peace and tranquility.  Not only did I notice a change in myself, but there was the trickle down effect on Joe also.  He did the dishes for me each evening because he said he wanted to do them - not because he had to do them.  He was more jovial and engaging and so much more loving.

We did make a run to the ER yesterday though.  Joe lost function in his legs after Sacrament Meeting yesterday and almost collapsed in the hallway.  I ran home and got his items to check his blood sugar - it wasn't low.  So, after having someone help me walk him out to the car, I took him to the ER since this same thing had happened in various degrees this last week.

After sitting there for over an hour, Joe felt much better and was able to stand and walk so that's what we did - we went home.

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

Make No Mistake...

I love my husband with every fiber of my being.  No one has or will ever love him like I do.  No one has or will ever take care of him the way I do.

I try to protect Joe from any more pain and difficulty than necessary.  That's why I don't tell him when something goes wrong or when I'm having a hard time.  I don't cry in front or around him.  I don't want to worry him, so therefore, I carry the burdens for both of us.

I know I am overprotective.  Sometimes I wonder if I'm too overprotective.  If I carry the burden alone, am I keeping us from sharing part of our journey together?  If I continue doing as I am, am I keeping him from continuing to have his own independency even though it's a fact that he's not going to get any better?

I've Changed

I realize I've changed alot since I've become Joe's caregiver.  I'm not sure exactly how and when I started noticing the change, but I know that I'm definitely not the same.  I do know, too, that I will never be the same person that I was before.  This is very sad to me.  To know that many times it seems as though my former life belongs to someone else other than me.  It's almost like having an out of body experience and looking back on myself and my previous experiences.

My changes can be a good thing.  I've learned a lot.  I've learned I'm a lot stronger in certain ways.  I've found that I can do things I never thought possible.  A few of my opinions have changed - especially those opinions I was formulating about my dad and his care to my mom.  Now I understand why he set certain parameters for her to live by, i.e., going to be at a certain time every night; I understand his loss of patience and understand at times; I definitely understand his frustration at her lack of doing many things.  Most especially I do recognize his immense love for her.  Believe me, if you didn't love the person you are caring for, you wouldn't do it!  It's a tireless, thankless job filled with no sleep, no alone time, no real conversation nor communication between you and the person you love and married.  I've learned to be even more resourceful.  I've learned that I can stand on my own, when necessary.  I've learned who I can count on and who I can't.  I am still learning that I can't do eveything myself and if not now, sometime in the future I will have to rely upon and ask others for help.

I've gotten tougher in some ways and softer in others.  These changes haven't come easily and didn't happen all at one time.  I've had to give up so much along the way.  Things that really mattered to me.  I can't do everything I used to do and now would love to do.  I could make a list of all the changes in me, but then I might wind up feeling really sorry for myself and really mourn those losses.

I do know that I've felt so angry at Joe at times for putting me in this situation.  I want back the man I married!  I want back the man who used to write my love poems, who prepared dinner for me, who made love to me, the man who made me genuinely laugh everyday, the man who could take care of himself by selecting his clothing and dress without assistance from me - I miss and mourn for that man.  But, I love this man too.  I've seen him cry because he mourns for his lost past; he's cried because he knows what he's done to me and he says he's so sorry; I've seen him cry from frustration of not being able to remember something, find his glasses, not be able to walk without falling - I think we miss each other.

The Best Laid Plans

I've found out that generally it does no good to make plans.  I make appointments to meet with friends or do something, with or without Joe, and then BOOM! out of no where all those plans change.  Sometimes happens to Joe and everything comes to a halt.  I've almost gotten to the point that I don't want to make plans at all.

My life revolves around Joe and his conditions.  I'm kinda getting used to it though.Whenever I do schedule something or am asked to attend an event, I always answer "Lord willing and the creek don't rise and all goes well with Joe..."  I can't count on anything happening for a certainty.  Everything is contingent on Joe.  Everyday, everyone, including me, contends with the daily "what might could happens".  We work our normal lives around the weather, car troubles, our work, etc.  We all have uncertainty in our lives, but when so much of my uncertainty comes because of Joe, it becomes doubly frustrating and maddening at times. 

The changes in plans often cause me to feel resentful and irritated at Joe - though I realize he's not doing any of this on purpose.  I remember that last year I had purchased tickets for us to attend the regional Professional Bullrider's competition in our city.  I love bullriding and was thrilled with the prospect of watching it live and in person and very near the bottom of the stands.  I was psyched!  I had asked Joe if he needed to use the restoom before walking so far down to the bottom.  No, he said he was fine.  Within a few minutes just as the lights dimmed, he needed to go and I had to help walk him up those dark steps.  Then some minutes after returning again, he needed to go again.  When he was ready to be seated again, I told him "no, let's just go"!  I was not going to keep walking up and down those steps and was missing the rodeo anyway - so we left.  Yes, I was upset.  I had looked forward to this night for several weeks and now I was not going to experience it.

I've arranged to have lunch with girlfriends and have taken Joe with me - because of guilt and necessity when I didn't want to.

I've not attended evening parties or get-togethers because I felt I needed to be with Joe.  I've missed so many baby or bridal showers or evening Relief Society meetings.  I think I've written somewhere else that I dropped out of a photography class I wanted to take so badly because of the guilt of having someone stay with him on those nights.  Even church attendance is not regular when I so desperately need that quiet comfortable feeling of peace.  We make plans to attend, but then Joe's physical condition may not be conducive to attendance.  Or, we make go only to have to leave.

Yes, uncertainty is part of life.  I am going to have to learn to make my plans and just keep being flexible (and forgiving) enough to make adjustments as needed.

My Quality of Care

I don't always feel confident that I give Joe the kind of care and attention he deserves.  Sometimes I worry that I won't be able to figure out what I need to do and make the right decisions.  What if I make the wrong decision?

I do know that when moments of crisis has occurred though, I have had some innate sense of right and knowledge kick in at the precise time I've needed help.  I may have been talking out loud to myself, panicking, talking to 911 on the phone and praying all at the same time, but I have had that instinctual need to save Joe's life click for me - at the right time.  I have risen to meet some very difficult challenges and felt confident and pleased with myself in the end. 

So, the same type of care that I give to Joe in moments of crisis, I want to be able to offer during the "normal", non-panicked times.

They say, "God doesn't give you more than you can handle."  (I say, "He must have me mixed up with someone else").  Some days it's a constant rush of chaos, combined with crisis and it's just react, react, react.

During those times, I have no choice but to grab onto whatever I can - intuition, instinct, Mother Magic - whatever label you want to put on it.  Everything happens so quickly, so instantaneously.  DECIDE.  RESPOND.  ACT.  Do the best you can knowing that there is no right or wrong, it's just DO IT!  It is truly a living hell that no one looking in from the outside can fully understand and they certainly should not be judging.  I've had to move and move quickly and nothing seems safe at that time.  I've come to fully realize that my Heavenly Father has truly guided me in my thoughts and in my actions.  By doing so, I have saved the life of my husband on several occasions.  There have been times after the crisis has been averted when I have just had to sit down and cry when the reality of what has just transpired hits me.  I have literally had Joe's life in my hands.  What if I hadn't done the right thing?  What happens if I can't respond the next time?

When I do come out on the other end, I wonder how I lived through it and I take a deep breath and say a prayer of thankfulness.

Someone wrote:  "Every crisis comes with automatic Power steering".  Amen.

Fireproof

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.