I’ve been sitting here for a couple of minutes trying to decide what title to put on this post. I feel like this is a chronicle of my life for the past few years and I need to log on every once in a while to update it. I may get to a point where I blog every day like I used to. The last couple of years have been so difficult to write about. My life has been full of pain and sorrow and I’ve lost the joy and spontaneity that used to be such an integral part of living.
Donnie passed away last Tuesday evening and I am, to put it in one succinct word, devastated. I miss every part of him. I know it will get easier but it’s the most significant loss of my life. I feel like I’ve been cut in half. You can’t share your life with someone for 45 years and not be broken when that bond is taken away. It’s still so fresh and raw.
Yes, he had cancer and we knew it would eventually take his life but I wasn’t prepared for how quickly he would be cut down. A month ago, he was weak from chemo but still walking around, getting in the car and going to the store with me. I’d let him out at the door and he’d get in a scooter while I parked. And then, he went for chemo and they wouldn’t do it because they said he had a touch of pneumonia. They hospitalized him and he was in the hospital for a week and a half before they sent him home on Wednesday. While he was in the hospital, he was in bed and I didn’t realize how weak he was. You expect someone to be weak when they’re in the hospital and stuck in bed. He didn’t want to eat but then, hospital food is horrible so I didn’t think much about it. He was getting up to go to the bathroom and he was chatting with me.
Coming home was a shock. He couldn’t walk from the car to the door. We had to get his scooter. And then, he could barely get up the three steps of the front porch. He collapsed in a chair in the living room as soon as he got in the door and had to rest for more than an hour before he felt like he had the strength to walk into the bedroom and get into bed.
I couldn’t figure out why they sent him home. He was ten times worse than when he went in the hospital and yet they sent him home. It was after 6:00 by the time we were home and I knew his doctors were gone for the day so I decided to make a few calls early Thursday to find out what was going on. I tried to call his oncologist but he was on vacation and out of the country. Then I tried to call his pulmonologist but he was on vacation, too. Donnie said he just needed to rest and he’d probably feel better on Friday.
Friday was the Fourth Of July and no one was available to speak with. We discussed it and decided if he wasn’t better on Monday, we’d take him back to the hospital.
Saturday, he continued to weaken and his breathing was difficult. He was on oxygen at home but he still felt like he wasn’t getting enough air. He had to sit up in bed, propped up on a dozen pillows to get relief but he still felt bad. Finally, on Sunday evening he told me he thought he should go to the hospital. He said he knew he couldn’t walk out to the car and so I called an ambulance.
I changed clothes and arrived at the hospital about ten or fifteen minutes after the ambulance. He was in the emergency room and they had placed a Bipap mask on him. It covered his nose and mouth so he couldn’t speak. He indicated to me that it really helped and he felt much better but he couldn’t talk because an alarm would go off every time he tried to remove the mask. They told me they were admitting him back in the hospital and would let us know when a room was available for him. After three or four hours, they told me they were moving him to ICU. I was shocked but they said it was just a precaution they took whenever a patient was on a Bipap machine and had previously had open heart surgery.
He finally got settled in the ICU and wrote me a note telling me to go home because it was almost 2:00 a.m. and we were both exhausted.
The next morning, I called the ICU to see how he was doing and the nurse said he was a “very, very sick man” and that I should get up there.
Another shock, seeing how much weaker he was on Monday morning. He was still writing me notes but I noticed how shaky his handwriting was and I was so confused I couldn’t grasp the overall picture of what was going on with him. They were talking about Hospice and it broke my heart because I knew that Hospice meant there was no chance of him getting better. He told me that he knew he’d lost the battle and he just wanted to come home and be with us as much as possible before he died. I figured we’d have nurses in and out of the house and they told me they would train me to give him his meds and treatments and someone would come by every few days to check on him. They told me it was mostly about pain management and making him as comfortable as possible. I spent the day with him and he slept a lot but I knew he was exhausted and on pain pills. I finally headed home for the night around midnight when he was sleeping.
On Tuesday morning, I went to the hospital and the minute I walked into the unit, he heard my voice as I spoke to the nurse and became very agitated, motioning for me to come to him. I went and I saw how desperate and agitated he was and asked the nurses what was going on. They said the doctor would be in shortly to talk to us. Donnie and I listened as the doctor said his pneumonia wasn’t responding to treatment and he wanted to do a CT scan to see what was going on. The doctor said he didn’t know if the mass in his lungs was pneumonia or cancer. I told him that his oncologist had just told him, the week before, that his cancer was not that critical yet, no where near hopeless, and that they had a lot of things they could still do to treat it. The doctor said he wasn’t responding to the antibiotics and he hoped the scan would help us figure out what was going on.
They came back an hour later and said they couldn’t do the CT scan because he was too agitated and it was difficult to do with a Bipap machine anyway. He said he thought Donnie was within a few days of dying. I was devastated. I had thought he would probably have a slow decline with more and more visits to the hospital and a continual weakening interspersed with periods at home.
Donnie and I tried to discuss what was happening but he was weak and he couldn’t talk so he was using hand signals and short written words to communicate. He was telling me that the electric bill was due and I needed to pay it. Telling me that he wanted me to make the decision, if it came to it, not to resuscitate and that he didn’t want anymore treatment. Just wanted to be free of pain and able to rest as much as possible. He absolutely hated the Bipap mask and kept trying to rip it off but then the alarms would go off and the nurses would rush in and restrain him enough to put it back on.
I made the phone calls I’d been dreading. Called his sisters in Florida, called our sons and told them he was very weak and I thought they should come and see him NOW because I was afraid he was approaching the point where he would be receiving more and more medication and his time for being lucid and communicating with them was limited. David told me he was leaving work immediately and would be with me in a few minutes. He arrived just 20 or 30 minutes later but Donnie was not able to communicate because he was struggling to breath and he had been given morphine as a part of the Hospice treatment. He kept trying to take the Bipap mask off his face. He hated that thing. David stayed about an hour and told me he was going to pick up Darryl, Andrew and Steven and would be back in a few minutes. As soon as David left, they told me that they were going to move Donnie out of ICU and up to a private room so we could have more privacy and room for family to visit since the ICU room was so crowded and because they would be simply trying to keep him comfortable but he wouldn’t be receiving any more treatment. They removed the Bipap mask from his face and he immediately became very calm and serene. They replaced the Bipap with a bag and mask and he tried to fight it but he was too weak to take it off.
I followed him up to the room and the nurses brought out a roll away bed so I could stay in the room with him for the next few days. We were getting him settled and he became very calm and quiet and his breathing became very slow. I realized that he was leaving me right then. I don’t know how I knew but I did. He just became so quiet and peaceful. I sat down beside him on the bed and held his hand. It was just a matter of a minute or two when I became aware that my brother was standing beside me with his hands on my shoulders and my sister was on the other side of the bed holding his other hand. The roll away bed was gone and all the doctors and nurses had left and there was no one else in the room. My sister said, “Do you want to take his mask off?” and I told her I did. We removed it and I watched him relax and then he slowly quit breathing. I was so grateful that he seemed so peaceful. No more gasping for air or fighting that damn mask. Just a few slow, peaceful breaths and then he was gone. I had been focused only on Donnie and those private, quiet moments we were sharing and my sister went out in the hall and motioned for the doctors and nurses to come in. They checked for a heartbeat and then told me I could stay as long as I wanted and everyone left. It all felt so right. It was so hard to watch him fade away but I never doubted what I was doing for a minute. I knew what he wanted and he had trusted me to follow his wishes. And I wasn’t torn with indecision or doubt. I knew I did exactly what he wanted and exactly what I should have done. I know I’m going to suffer for a long, long time but he didn’t.
I am crushed. Heartbroken. And yet I would not have wanted him to suffer a slow agonizing death. We lay in bed together holding hands and talking Saturday night and he was gone by Tuesday afternoon No long lingering weakness or loss of dignity. I still don’t understand how he died. The pulmonary specialist said he didn’t have pneumonia or he would have responded to the antibiotics. The oncologist says his cancer was not advanced to the point that it would have caused this. I don’t understand what took possession of him and advanced so rapidly. I’ve given up trying to figure it out. I don’t know that the answer would help me and, if he was not going to survive this cancer, I’m glad he went quickly and didn’t suffer a lot. I watched my mother and father die slow deaths and was praying for them to die simply to ease their suffering. I’d much rather be the one suffering than Donnie. I loved him too much to be able to bear that.
We’ve known for a long time what we wanted to do about funerals. Neither of us want one. We were shocked and appalled at the traditional funeral fiasco and wanted to avoid falling into that trap. Donnie was cremated and his remains were placed in a beautiful gold and emerald green urn. I arranged for a memorial service and rented a lovely room at a local funeral home for the day. Friends and family gathered to share memories and celebrate his life. It was lovely. We’d grown quite attached to the chaplain at the hospital who talked with him and visited him often during his illness. She and I cried together and I felt very comfortable with her and felt like she understood and recognized our love for each other. She invited people to share memories and many did. It was a moving memorial to him.
I actually have a fairly large insurance policy on myself that I took out some time ago. When I die, I want to be cremated and my ashes placed with his in our urn. The insurance will pay for my memorial service and provide for our children and grandchildren to travel to Hawaii (our favorite place in the world) and scatter our ashes off the Na Pali coast of the island of Kauai.