Caregiver of the Month Spotlight
Back in march of 2004 my life took a complete turnaround. My husband of less than 2 years had developed a pituitary tumor. The doctor told us that surgery might leave him blind. He had his first surgery on March 4, 2004. We were so happy that he still had some eye sight, even though he was considered legally blind. On the morning of March 7th, the doctor came into the hospital room and sat down in a chair and said, “We have to talk”. The MRI results from the test the day before showed that they didn't get enough of the tumor. John was scheduled for a craniotomy on the following morning. My heart felt like it had dropped to my feet. I tried not to let John see how upset i was, but he too, was hiding his feelings. We made the necessary phone calls and then waited for the day to pass.
I was instructed to come to the hospital by 7:00 to see him before surgery; yet at 5:45am the phone rang and it was John. They had just told him that he would be going into surgery at 6:30. I hurried and got dressed drove down the interstate - I can't remember at what speed. I walked into his room as they were putting him on the gurney.
I went to the waiting where I waited for the next 12 hours. The nurses were real good about keeping us informed as to what was happening. Then the doctor finally came out and said the surgery was over and that John was being placed into the ICU. It was then, that I realized that John was blind.
We embarked on a roller coaster ride like no other. The doctors would get one medicine correct and another would go bad. Between the ICU, John’s regular room and the rehab floor, he was in the hospital 6 weeks
After coming home, I could not believe that this was the man I married. He had become angry, bitter and had no control.
Six weeks later he started radiation treatments. On the first day of his initial treatment, the doctor there told me that we were wasting our time, that neither radiation nor anything else would help John’s current condition. I became very upset and called the surgeon. He explained to the doctor giving the radiation that he wanted the treatment done and did not ask for his opinion.
John went thru 36 treatments. In July i was able to get him in to the blind school offered at the local VA hospital. John remained there until the 1st of October. They worked very diligently with him, but due to the brain damage, John couldn’t retain their teachings.
In October of 2004 John was placed back into the hospital for the insertion of a shunt in his head. Fluid built up around the brain. What should have been a simple surgery turned into anything but simple. Yes, the surgery went ok, but afterwards the bottom fell out. He developed a blood clot in his leg and had to be rushed to emergency surgery for a green filter to be placed. Then he developed infection in his lungs. He had several close calls, but he survived again.
I try so hard to be patient. I didn’t want to get mad at him and the whole world, but at times i couldn’t help myself. I still have to constantly work at this and it has been a huge challenge for me. I have had no help or moral support from his kids or his sister. If it had not been for my kids i don’t believe I could have pulled through it all as I have..
I guess one thing that makes this even worse is that i took care of my first husband for 12 years before he died. Now I see it happening all over again.
When my first husband became sick, we had 2 small children. He started developing blood clots in his lungs. He went thru several surgeries and lost one lobe from his left lung. The clots drank up all his oxygen and the lung finally died. His doctor finally suggested that we check into a lung transplant and he sent us to Pittsburg, Pa. We waited 18 long months for the call that would tell us they had a suitable lung.
The call came about 2:00 am - 3 days after our youngest child graduated from high school. We drove 30 miles to a small airport and we were transported by a medical plane to Pittsburg. I sat at the hospital all day by myself waiting to hear from the doctor. Finally, about 5:00 pm the doctor came out and told me that they were have trouble getting him off the heart-lung machine and it didn't look good. Then about 6:00 he can back and told me that my husband had died on the operating table.
I didn’t know what to do. All i could think of was getting home to the kids. The last plane going to my home town was 8:00 pm.
I hurried and made some phone calls and got a taxi to the airport. I got a flight into Charlotte, NC. When i arrived, I called a cousin in Columbia to come get me and take me home. By the time I arrived home, my brother had been to the beach, picked up our son and had him at home. I know deep in my heart that the lord let him live long enough to see our son graduate.
I grieved along time. Here I was a 40 year old widow who had no idea of what she was going to do. Danny didn't require as much 24/7 care as John does. I was able to work through out most of his illness.
Now, having to deal with this all over again, is sometimes more than I can handle. Yes, i do loose it at times. I try very hard, but John knows when I’m ready to blow and he tries to help and ease the pain I’m feeling. John is the most thankful and loving man I could ever want to me and I consider it a privilege to be married to him.
About 6 weeks ago, I spoke with the doctor about John’s confusion and his wanting to sleep all the time. He told me that there was nothing else that can be done. He said to enjoy what we have because he can't tell me how longer we will have. So, we are doing what we want - as John feels like it, If he wants to go to the mountains or beach, we go.
I don't know what tomorrow will bring for us, so all we can do is live each day to the fullest. I have often wondered if Danny might have lived longer if I had not talked him into the transplant. Now the doctors want me to take John to a large teaching hospital, like the Mayo Clinic, Duke or Emory. Yes, I'm scared that if I take him he will not come home either just as Danny didn’t. This fear takes over me at times.
Empowering Caregivers has been a tremendous support for me. There are some things I find too painful to talk about and I am hoping to work through as much as possible.
I'm not the best person to be writing for the spotlight, but it is from the heart. I truly believe that the lord does not put more on me than I can carry. He does give me the strength I need to survive.
This past August 31 we have been married three years and I have no regrets.
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