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What's Normal?

Posted Feb 10 2014 8:01pm
For those who may not know, my husband Tim passed away on May 17, 2013. He had been disabled for about ten years. The last two years were really difficult. I lost my job as a Program Director in a group with pregnant and parenting teen girls who also had a diagnosis of mental illness ranging from post traumatic stress disorder to schizophrenia to clinical depression etc. I loved that job and losing it made life difficult for us. We moved back to central Illinois and stayed with my sister Jackie and her family from February to May. We were thankful to have a place to go but felt like we were putting her and her family out. We slept on an air mattress in the living room. We had very little money coming in and Tim was without health insurance for a bit. As a diabetic with related issues he was on multiple medications that were expensive. Eventually we found an income based apartment and moved. I took a couple college classes to get my teaching certificate reinstated. I started substitute teaching and later worked a year as a classroom teacher aide. Fast forward to January of 2012. On the way to a doctor appointment for Tim, he fell and broke his hip. It was at this time he was diagnosed with end stage renal disease. His kidneys were barely functioning. He had to get a port put in and while recovering from hip repair he started dialysis treatments. It was the beginning of the end for him. He hated dialysis. I realize no one likes it but there were times he would refuse to go. As time went on, he got weaker. They increased the length of his treatments. He was going three times a week, four hours at a time. It consumed our lives. I would drop him off at 5:30 AM and he took a bus home. He was getting weaker and weaker. I got angrier and angrier. If only ... Was in my head a lot. He could have prevented this. He could have extended his life. He could have ... Was also a common thought. I wanted him to have peace. I wanted to rest. I wanted it to go away. I wanted him to go away. He was cranky. He was angry. He was depressed. He was hell to live with. He was not abusive but life was so hard. On a Monday before I went to work, he complained that he did not feel well. I offered to stay home but he insisted I go to work. I checked on him at lunchtime and he was no better but told me to finish my day. When I got home he seemed weak. We had an appointment and I wanted to cancel it but he refused. So we went. Walking in we had to stop multiple times for him to catch his breath. Then he started to sweat profusely. By the end of the meeting he could barely stand up. I got the car and took him to the emergency room. Once there, his blood pressure was very high and his oxygen saturation was very low. Got him on a gurney, the doctor came in and Tim coded. He stopped breathing and his heart stopped. They revived hi and sent him to another hospital when he was stable. He was on a ventilator and kept sedated so he would leave the tubes alone. By Wednesday, I requested they remove the ventilator and refused further dialysis treatments. Tim did not want to live on machines. He woke up and was confused. They moved him to the hospice floor and advised me his lungs were filling with fluid and he would not leave the hospital. Thursday, Tim had a fabulous day! Everyone in the family came to visit him. He laughed and cracked jokes. He was ornery. He ate whatever he wanted. He slept a lot. That evening, I sent everyone home, stretched out on the couch and just watched him. The nurse was in and out all night. She gave Tim his morphine shots to keep him comfortable. We talked briefly throughout the night. He was so serious telling me he was sorry and that he wanted me to have a new car before he died. He wanted me to be settled in a home, not an apartment before he died. He realized these things were not going to happen. I assured him none of it mattered. I assured him over and over that I'd be okay. One of our last conversations he said, "Make your car payment and insurance. You're going to need your car. Everyone else can go to hell." He made me laugh He started to pass a little after 5:00 AM on Friday morning. He stopped breathing several times and his heart stopped a couple times. I sat there, holding his hand, telling him I was okay and he could go. At one point, he looked around the room as if he really could see and smiled such a peaceful smile. I asked him if the angels were there. By now, he was non-verbal but he looked at me and grunted. I told him to go on with the angels. I told him to go with his mom and dad, go with my mom, go with our dear friend Teresa who passed away a couple years before. Still he hung on. By now I had Christian music playing softly on my iPad, was holding his hand, crying silent tears, and rubbing his forehead. It was not until my sister Jackie walked in shortly after 8:00 AM that he finally ley go. She walked in and I was a mess. I told her he just wouldn't go. She took his hand and he opened his eyes. She told him I wasn't alone anymore so he could go now. She assured him she was there with me and would take care of me. He sighed, took two breaths and died. I have to be honest and say I was wrong. I wasn't ready for him to go. I'm not okay. I'm doing the best I can do but I'm not doing it very well. Right now my life is a total mess. This has been pretty emotional. I'm going to stop here for now. I will pick up the tale tomorrow. It is my goal, once the background is laid, to try to work through the grief here, in a place I feel safe. If you feel the need to leave harsh comments or criticize, please feel free to not return. I say this because I have had some very hurtful things said to me by well meaning people. Doesn't hurt any less. This is part of my own therapy in making my way back to some kind of a normal life without my husband. As much as he irritated me, I loved him. He was my life for 28 years. And so the story will I fold.
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