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.

My trip into the Past

Something very exciting has happened to me in the last few weeks.  Somehow, a fellow classmate from my high school appeared on my facebook page with a comment.  This started my journey into the past.  I have reconnected with old friends from high school and grade school.  My 50th high school reunion is in the works and I have been given an opportunity to attend this reunion. 

I was born and raised in Kansas City, Missouri, and have not been back for at least 35 years. During those years I lost contact with my friends and have now been able to find them again.  I am a great believer that things happen for a reason, and I believe this will give me an opportunity to “refresh” from my caregiving.

My husband’s daughters will be coming to California to care for their dad while I am gone.  They love him very much and I know he will be well taken care of.  I could not go if I thought otherwise.  Since his awareness is non-existent most of the time, I cannot take him with me.  He would be very confused and unable to process anything.  It would also be hard to care for him while traveling and staying with my friend.

The most difficult thing for anyone to do while caring for him is the incontinence.  He is bowel and urinary incontinent and has to wear depends all the time.  This will be hard for a daughter to take care of so I am exploring other possibilities. 

I know, in my heart, that this will all come together somehow. 

This may be my last chance to see friends and family that I have missed for so long, so I am going to take this trip and believe that all things will work out.

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.

Love, Courage and Commitment

This post is not so much about my husband, but rather about a blog I have been following and the impact it has made on me.  It is widowlady302.blogspot.com.

Whenever I read her blogs I am so moved that all I can think of is the journey she and her husband took together; the love they shared, and the incredible journey with illness and dying they went through. 

I have been grieving the loss of my husband, as he was,  for so long that this blog has helped me tremendously to put that grief aside and focus on today more than I ever have.  I have been so fortunate to have my husband with me, even though he is unable to function in any way.

I have been told that it is the quality of life that counts.  I agree with that, however, who can say whether my husband’s “quality of life” is not there.  I believe that he is content even though his awareness of surroundings and people is, at times, nonexistent. 

In reading the Widow Lady’s blogs I see such tender, loving care and commitment  that it inspires me on a daily basis to do everything I can to keep my husband content and well.

I have learned over the years that my husband does react to my own emotions, so I have tried to do my own crying out of his sight.  This is hard at times, but it is totally necessary.

I recall when he came home from the hospital and his care was totally in my hands, I decided to take him to the movies.  The choice at that time was “Titanic” which had just come to the theaters.  During the scene of the sinking he turned to me with panic on his face and asked “are we going to be able to get out of here?”  I realized at that moment that his sense of reality had been distorted by his brain damage.  That was the last time we went to the movies.  Now, I make sure he is surrounded with comforting things that make him laugh and that make him feel safe.

The Widow Lady’s journey with her husband has moved me beyond words.  Her words have given me great strength and re-dedication to our own journey through the fog of brain damage. I  know, without a doubt,  that when the time for my husband’s flight comes, he will be ready and he will be at peace.

Our Climb to the Mountaintop

In 1995, two years before my husband's life changing brain injury, we were on a trip to Colorado to see his eldest daughter (we are a blended family).  While there, we bought a beautiful piece of land in a mountain community just north of Fort Collins, Colorado.  It had a breathtaking view of the valley below and the Rocky Mountains beyond.  We were going to build our dream "log cabin" on this property and spend our retirement days watching the deer run through the property and the beautiful valley below.

Our climb to the mountaintop was not to be on that wonderful piece of God's green earth.  Instead, it was going to be a climb that neither of us would have imagined.  We are still making that climb, one step at a time and we have come a long way, together.

At times, I think it is a true blessing that my husband is not aware of what has happened to our lives, and I find myself wondering "if only".  I have to put that aside most of the time because it takes me to a place I don't want to be, and takes my focus off of our "one day at a time" life.

At one time during the first days when he was in a coma and unresponsive, I was told that I should "put him" somewhere where he could be taken care of.  Since he was on a ventilator for quite some time, I was also told that we should "pull the plug".  I will always be so thankful that I did not have to make that decision, his brain was not dead, it was damaged.

The first step in our climb up our mountain was rehabilitation and learning to walk again.  One day, when I went to the hospital and went to his room, I saw that the bed was empty and his wheelchair was sitting outside the room.  I ran to the nurses station and asked "where is my husband".  I have to admit, I was so scared.  She pointed down the hall and there he was, holding onto his physical therapist and WALKING!!  I can't describe how relieved and elated I was to see that.  It was predicted that he would never walk again and that he would probably remain in the vegetative state he was in while in intensive care.  I refused to believe that.  He was just 61 years old and had just retired 6 months before.

This was just the first step up that tall, tall mountain.  There are many to go, but I know we will reach that mountaintop together someday.  That is what keeps me going every day.

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.

Our Adventure with the Tub

We are fortunate to have a jetted bathtub.  I enjoy it because it relaxes me and on cold days it warms me.  Not to mention the feeling of the jets on my sore back.  I decided one day that my husband may benefit from the jets and the soothing effect it always brings me.  I managed to get him into the tub, turned the wam water on and started the jets.  The look in his eyes told me that he was enjoying the experience.  It is not equipped for a person that has a disability (in my husband's case, the cognitive ability to lift himself out of the tub).  When it came time to get him out, I found myself in a great delima.  I could'nt get him to understand how to get out of the tub.  All my efforts in coaxing him to put his legs over the tub and try to stand up were futile.  I really got into a panic and didn't know how I was going to get him out of that tub.  Fortunately for us, my son doesn't live too far away and in my panic I called him and told him I could not get Dad out of the tub.  He jumped into his car and when he got here he put his arms around my husband and pulled him out of the tub to his feet.  Needless to say, he hasn't been in that tub again.

I have found tubs that have doors on them and seats, but the expense is beyond our means, so until we can afford to install a tub he can get into and out of, he won't be able to use the tub. 

Since he has no abiltiy to understand things due to his brain injury, I have found over the years that I can actually see in his eyes when he is in pain or is having a problem of some kind.  The trick is to try to figure out what the problem is. 

Care Giver to Brain-Injured Loved One: Valentine's Day

Care Giver to Brain-Injured Loved One: Valentine's Day

Valentine's Day

As with many of the holidays, this is one of the hardest of all for me.  I recall a few years before my husband's brain injury, I was working and was leaving my office for lunch.  I noticed my husband in his work truck in front of my building looking intently at the building.  I honked and we pulled over to the side of the street and agreed to go to lunch together.  Later in the day a dozen roses were delivered to my work address.  I realized with a chuckle that what my husband was doing in front of my workplace was checking out the address so he could have the roses delivered there.  This is one of the great memories I have and I chuckle at it every time I think about it, which is usually on valentine's day.    Happy Valentines Day to all the bloggers out there, hope it is memorable one for all of you.

Day to Day

Yesterday was a good day for my husband. He seemed more aware than he usually is. He was laughing with our grandson, Conell, and seemed as though he understood what was gong on. It is hard day to day knowing what he is aware of. It is on those days when I feel as though hope is still there after 12 years of caring for him. There are days when I have not much hope, then something happens and my hope is renewed.

Finding Yourself while caregiving

I sometimes have difficulty remembering who I am and who I was before my husband's tragic brain injury. I am so focused on his needs most of the time, I sometimes feel I have lost myself. I have been told by family and friends that I need to do things for myself, but that has been something I have been unable to do. I tried leaving him at an adult day care once, and when I returned to pick him up, all he could do was cry. That tore my heart up and I have been unable to do that again. Most of the time, I don't feel a need to take care of myself and find other things to do. It doesn't seem important to me. His care is my only concern most of the time. When we have the grandkids I can focus on them and him - it keeps me busy.

Today is the First Day

Today is the first day of the rest of our lives.  That is so true and when you think about that, it makes today a better day. One of the things I have learned in caring for my husband is that each day is a new day to start again.  I recently learned how important hydration is to an injured brain.  My husband was in the hospital in July with pneumonia and dehydration.  As I always try to make sure he is getting enough liquid, I guess I didn't realize that he wasn't getting enough liquid.  I learned the hard way about hydration and the effects on the brain, especially a brain that has been damaged.

Here are the things I have learned over the course of his caregiving:
1.  Repeat, repeat, repeat what you want the brain-injured person to learn (or re-learn)
2.  Hydration - so very important
3.  As much exercise as you can help with (in my case, taking his hand and making him walk around the house as much as possible).
4.  Read to them
5.  Help with words.  If I just start the first syllable of a word, he can many times remember the whole word.

The doctor explained to me that our brains are like file cabinets.  In my husband's case, his file cabinet was emptied and scattered everywhere.  Trying to get this back together over the last 12 years has been a challenge, but in some instances, it has worked.

Today is the first day of the rest of our lives, and we will live it to the fullest.

Our Journey with Brain Injury

Our journey with brain injury started on a crisp October morning in 1997. My husband and I had just completed our morning walk and I was getting ready for work when I heard a horrible crashing sound coming from our kitchen. I ran to the kitchen and found my husband on the floor gasping for breath. He was in the midst of a cardio-pulmonary arrest. In my panic I could only think of pumping on his chest until the paramedics arrived. They were able to resuscitate him and restart his heart. Unfortunately, he had suffered a lack of oxygen to his brain, resulting in damage to his left temporal and both frontal lobes.

Through the ensuing days, there were many setbacks that could have ended his life, but through them all, he came back. After three months in the hospital, two of those months in a rehabilitation facility, he came home with me. I searched high and low for medical procedures that could help him, including hyperbaric oxygen treatments and biofeedback. I was encouraged in reading about brain injury that the brain can be retrained by repetition.

Through the last 12 years of caring for him, we have had our good days and our bad days. I choose to remember the good days, since everyone has bad days. We live each day to the fullest and believe that tomorrow will be better. We have been blessed with four great grandchildren since his illness started. They are wonderful children and as they watch me caring for "grandpa", they have learned (without knowing it) great compassion toward grandpa, and others with disabilities. I am a caregiver to my husband, and at times, caregiver to my great grand kids.

Words are difficult for my husband, and lately he has started calling me "baloney".