My trip to the Past

This is a picture of me last September, when I actually took four days away from my beloved husband to attend my 50th high school reunion (wow).  He was well taken care of by his two daughters and by in home services that sent someone to do his showering and changing.  I actually spent four days connecting with old friends and seeing my birthplace for the first time in 35 years.  I was amazed that I did not worry one bit about my husband because I knew he was being cared for with much love.

It was a wonderful, reflective time and gave me a "refreshing" so I could come home and continue caring for my wonderful "better half".  This was a change for me because at no time before did I feel a need to do something like this.  I couldn't stand the thought of being separated from my husband even for a few hours, let alone a few days.  It worked out wonderfully and I am so glad that I did this.

Now we are back into our routine, but with some slight changes.  We moved to the state of Washington last November to be near grandchildren, it has been an experience.  I always thought I liked the rain until I was confronted with it day after day.  Then, I developed double pneumonia and was quite sick, but am now on the mend.  My husband recently fell and suffered a compression fracture in his back and we have been receiving wonderful, supportive care through the state of Washington and it has helped me tremendously.  He is now on the mend and we are back into our routine.  Will try to keep this blog going because it gives me a focus, and hopefully at the same time, may help others.

Another focus I am working on is an online store concentrating on garden items - it has been fun and a lot of work - but I can do it.

.http://www.insidethegarden.com -

The Purpose of Life

Today is my husband’s 74th birthday.  His brain injury occurred when he was 61 years old.  It is amazing to me that he is still with us.  I am grateful for every day, every month and every year that we have had together.   When I ask him how old he is he always comes up with the same answer - 59. 

I have often wondered in the past years what the purpose of my life is.  I guess we all go through that at some point.  I have mined deep within my heart and I know, without a doubt, what the purpose of my life is.  It is to help my husband in his journey, to keep him as happy as I can, to take care of his every need, and to help him through that portal that we all must go through. 

It is an awesome responsibility to be a caregiver.  In my husband’s case, his physical and emotional existence is entirely in my hands and at times it does get overwhelming.  Making sure he gets enough liquid (dehydration),  enough to eat, keeping him clean and shaved, and trying to make him laugh.    It reminds me of a mother with her baby.  A baby is entirely dependent upon their mothers and fathers.  The only difference for me is that my “baby” will never grow and change, and will never be able to care for himself again.   I try not to think about that, but just take each day as a new day and a better day.

I know what it is like for me on a day-to-day basis, but I have no idea what my husband is going through, and even if he knows things are “different”.

I am looking forward to my trip to my birthplace and seeing old friends and reconnecting.  I know that will be the “refreshing” that I need now.

Anguish, Anger and JOY

Moments of Anguish, Moments of Anger, Moments of JOY

My moments of anguish were spent in the hospital watching my husband struggle to survive his devastating-cardio-pulmonary arrest.  Watching his body swell to an unrecognizable shape when it was discovered that when he was intubated on our kitchen floor, a hole was torn in his windpipe and the ventilator he was on was putting oxygen into every tissue of his body.  A stint was put into place to release all the oxygen and the swelling went down.  Moments of anguish when we were told that he would remain in a vegetative state and would never walk again or function again.  Moments of anguish when his liver, kidneys and lungs started to fail.  Moments of anguish when he was moved out of intensive care into isolation because he had developed a staph infection.  We had to wear gloves and masks to visit him.

His body was deteriorating and it was so critical to get him into a rehab hospital, but the hospital wouldn’t take him as long as he had the staph infection.

Moments of anger.  When they told me that the rehab hospital would not take him with the infection, I screamed at GOD in anger and frustration.  My God, My God, where are you.  After my screaming, sobbing fit with God, I went back into my husbands room and the nurses came running in to tell me the ambulance was on its way to take him to the rehab hospital 30 miles away because the last test they had done showed that the infection WAS GONE.    Our doctor dropped everything to come to the hospital to put in his medication tubes so he could be transported to the rehab hospital.  The ambulance came and there was a mad dash to the rehab hospital because they would not accept him that day unless we could get him there by 5:00 PM.  The ambulance left the hospital at 4:00 PM and got him to the rehab hospital in time.  MOMENT OF JOY!  MOMENT OF MIRACLE!

There were many more moments of anguish, anger and joy to come.  Each, I believe, to teach me something about our journey.  As angry as I was at our loving God, I know, without a doubt, that everything was put into place for the journey we were about to take together.

I think I am waiting for the final miracle to take place.  That is for his brain to become whole again and to enable him to know who he is, who I am, where we are and how to do such a simple thing as getting himself a drink of water, or to become continent again.  I know this may never happen, but I never give up hope that it is possible.

Window to the Soul

The saying "eyes are the window to the soul" is so very true.  I believe you can see so much through a person's eyes.  My husband's eyes tell me so much.  I can see the "sparkle" in his eyes occasionally.  When I see that, it is so heartwarming.  I can also see his pain through his eyes.  I know his spirit and soul are OK because I can see that through his eyes.  Since he cannot communicate because of his brain injury, there are times when he reacts so appropriately to things around him.  Our 3 year old grandson was misbehaving the other day and my husband got upset and told him that "you are being a bad boy".   My heart leaps for joy when this happens (and it is very rare and sometimes months before this happens) and it gives me a certain peace that his soul and spirit are intact and well.

My wish for today

If I could have one wish today it would not be for money, fame, or material things.  It would be for one day to spend with my husband as he was before his injury.  To tell him about all the things that have happened in the last 12 years that he has missed.  The birth of four grandchildren, the death of his younger sister to pancreatic cancer, the death of his father at 94 years of age.  Of course the deaths in our family would be very sad for him, the birth of the grandchildren would make him happy.  I would tell him about the move to a new house that would ease my workload from caring for a house that was too big for the two of us, and was becoming expensive to maintain.  He would scold me for not managing our money too well, he was always the manager and I know things would be different if this had not happened to him.  I would tell him about the long road he has taken to recovery from his cardiac arrest and resulting brain damage, including learning to walk again.  I would tell him about how hard it has been to watch his day-to-day struggle to understand what is going on around him.  I would tell him about the funny things he says that make no sense, but I go along with them just to get him to talk.

If only I could have just one day to spend with him as he was.  That would be worth a so much to me.

What Others Think

I was just remembering a trip we took to Jamaica in 2000.  Our daughter was getting married in Jamaica and the whole family made the trip to see the wedding on the beach.

When we arrived in Jamaica, we had to go through customs.  My husband gets very anxious when he doesn't know where he is and when a lot of people are around him.  He begins to moan and all you can do is try to comfort him.  I was holding his hand and had my arms around him and was trying to calm him down.  In the next line was an older couple.  The husband came over to us and said to us "you two should get a room".  At first I was dumbfounded that a person would do this.  After I regained my composure, our daughter watched over her Dad while I went over to the man.  I was so furious I could hardly contain my anger but I told him in no uncertain terms that what he did was very rude and explained to him that my husband had a brain injury and all I was trying to do was to keep him calm.  His face turned red and he turned his back on me. 

It is hard to go out in public because people stare at my husband's behavior and I have gotten to the point that we don't go out in public anymore.  It is hard on him and it is doubly hard on me.  I must say though, that there are a lot of wonderful, understanding people and most of the time they assume that he has suffered a stroke.  I haven't lost faith in people, I have just learned that there are some people who don't understand and I usually can tell and I stay away from people like that.