the way it was

I have been reading a review of the birth of LisaM's son. I have felt that maybe if I share the passing of my wife, Sandra, I could get rid of some demons I have been carrying around with me. Most of this has been written before but only in bits, here and there.

In May of 2003 I came home from bus driver training. I had been driving a school around streets full of parked cars and on coming traffic. Then on the highways and then country roads. I felt I had done well and was happy to get home. I walked in and saw Sandra standing at the sink. At first all looked well but then she looked at me and I knew something was wrong.

She looked at me and said "well, they know what is wrong with me." Then she told me that she had COPD. Well, I didn't know much about that. I knew she had asthma and asked her what was the prognosis and she looked up and said "She (her doctor)said if all goes well, I have 5 years left, could be as short as 3 years and 10 years if all goes perfect." All was quiet for a while. I think I sat down and waited for something to happen.

COPD, Chronic Obstructive Pulmonary Disease, her lungs could not contract to expel the used air and/or could not expand to take it the air she needed. The air sacs were not elastic anymore, or not all of them. They were all going bad and when she didn't have enough sacs left she would not be able to breath. It is a slow and painful disease.

At first things went on as before, at time we would forget just how ill she really was. Then one winter day the family went to Six Flags for a nice winter eve at the park. It was a cold, for Texas, night and while walking around the cold air got to her. She could not breath, The family formed a circle around her to block the wind and she wrapped her scarf around her face and slowly was able to catch her breath. That was the start of a long slide.

Soon after that she had a wheelchair and she would turn the wheels by hand and I would go shopping with her and I pushed the cart and she told me what to put in the basket, Taught me how to shop. Open the egg cartons and look at the eggs, look at the price per unit, sometime the bigger packages cost more. Buy more, pay more, as she called it.

But things were getting worse. Soon she was on O2 24/7. Oxygen, the green metal tanks became part of our life along with an oxygen concentrator. A machine that takes the airs and removes most of the other gasses leaving the O2. At first we use 3 litters per min. not to bad, a tank could last 3-4 hours. Turning the wheels on her chair soon became to much and we moved to a power chair. We strapped a tank on the back above the batteries and we each carried a key to change tanks and washers to use on the meter in case we dropped one when changing the tanks and could not find it. She loved the freedom the chair gave her, she would zoom around the neighborhood and when she wanted to go at night I got her a flashing red light for the back and a very bright light for the front. What a joy to see her going and coming on her own. She was happy and soon she was known all around the "hood".

Then came the day when she told me, "I think you should go shopping by yourself. I hate to see you struggle to place the chair in the van and then load the groceries in the back. It takes to long. And besides, I get to tired. I could see she was getting worse week by week and then day by day. We raised the rate of flow of O2 from 2 or 3 ML per min to 5 or 7. She now no longer went for her rides alone and she became kind of home bound. She love Fast meeting and we tried to make it on those Sundays. One Sunday I looked over at her and she was slumped over to a side and her face was very red. I had to pull her upright and adjust the flow rate to a higher number and we lasted the meeting but it was the last time she went to meetings.

At night I would remember how she loved to leave me in the dust when we went to visit her doctor. Once the clinic police told her to slow down. Boy, she would make that thing move!

We started to talk about our "living will". She reminded me that she didn't want to have a ventilator and that she wanted to die at home. She begged me, no nursing home. I promised I would not do that.

May, 2007. My descent into my hell. May 2, 2007, Sandra had been feeling ill for a couple of days and on that day she didn't eat or do anything. She was awake but had a strange look in her eyes. Then evening she quit responding. She didn't move, her breathing was very shallow and I got scared. I forgot about our living will and called EMS. They were there in a very short time. They worked on her for about half an hour in the house and told me she she had to go to the hospital. I told them what hospital her doctor used and they said no, she will not make it that far. She have to go to the nearest one. The one about 2-3 miles away. They put her in the ambulance but then they worked on her for another half hour. They waved me in and off we went. When we were about 2 blocks from the hospital the guy in the back yelled to the guy in front, "she coding". The guy driving yelled back we are 2 blocks away and hit the siren and floored the gas pedal. We shot forward and got to the door very fast. When they opened the door I could see the monitor had 3 flat lines. They told me I had to go inside and could not be there.

I went inside and went to sign her in. I asked when I could see her and told me "we'll let you know." It was about 10 PM when we got there and it was about 3 AM when they let me in to see her. She had a vent. She had been intubebated. She was on a machine. I talked to the nurse taking care of her and she asked me questions. I asked if they would transfer to the other hospital and they said, no, she is to sick. They would transfer her to ICU as soon as they could.

Next day she was in ICU but had not been responding to anything. The machine was pumping and wheezeing. The doctor would only say, "she is very ill" I told him she didn't want a vent and he said it was to late. Once it is in it would take a court order to remove it unless she woke up and told them to do so.

After about 4 days she started to run a very high fever and the doctor told me that they though she would die that night. They asked what I wanted done if she passed away. I said " don't do anything". They had me sign a DNR and told again that they could not remove the vent but that they would not do anything if her heart stopped. I said I understood and again I had to sign a paper. A DNR is a do not resuscitate. This one nurse that I had learned to trust told me to go home, if any thing happened she would call me. Said I could not stay by her bed. I was very tired and needed a shower so I went home. While I was there I got a phone call from the hospital. A doctor told me that Sandra's kidneys were not working and he believed that by doing a dialysis he thought it would help. I asked him "what would you do if it was your wife there?". He said he would try it. I said ok, but nothing else.

No calls the rest of the night. Went in to see her early next morning and she was resting. I could see a big differents in how she looked and felt, She was not awake but I could see a great inprovment. She still had the vent. I now started to think of what she would say when she woke up and saw that she was on a machine.

Sandra's mother had died on a vent. She had not been able to come off of it. She hated it and Sandra didn't want that to happen to her. After a few more days, Sandra woke up and gave me her angry look. She could not talk with the vent but I knew she was not happy. She was still very ill and slept alot of the time. Then came the day the doctor told me they were going to ween her off the vent. They set the machine to only push air when she didn't draw in enough. I could tell when the machine was helping. In fact, first thing I did when I walked in was look at the monitors. I could tell how she was doing, could see her O2 levels, the whole bit.

But she was having a problem coming off the vent. Doctors stated talking about putting in a permanent fixture for the vent. They could not leave it the way it was. They gave us couple of days. Sandra let us know she didn't want that and I told them it was ok with me. They told me that now that she could let her wishs be known it was up to her. But she made it off the vent in the time given. The day my sons and I came to see her we walked in and the machine was gone. Not even in the room! She could talk and she wanted to know why she had been on a ventorltor. I told her I had gotten scared and call EMS they they put it in without me knowing they were going to do so.

22 days after the day she went in, I brought her home. I drove to the entrance and parked, took her wheelchair to her room and put her in her chair and pushed her down. I had to lift her out of the chair and into the van as they would not help unless I used their service. If I was going to take care of her I had to prove I could move her. It even surpised me that I picked her up and put her in the car.

Time marched on, In July it was like old times, she could walk a little and get in and out of bed. She started to teach Stephie how to cook things I like, gave away lots of her plants and enjoyed her grandbaby, Lianna.

August looked good at the start. But in the middle she started her final slide. Tino, a kid we had raised for a few years, called and came back to our house from Oklahoma. When he got here Sandra was back in the hospital. One day she started having that look again. I asked her if she wanted me to call EMS and she said "you better". I did and again they told me she was very ill and had to go to the hospital. Downtown this time. I told them "no vent" and they told me she might need one and I told them "no! She doesn't want one." So no vent. After a couple of days they had her O2 lever flowing at 30 ml per min. That is a lot. It makes a noise at that rate.

One day the doctor came in and she told him, "let me go home". The doctor looked at me and said, well, there is nothing we can do. She is using the last of her lungs. She has no reserve left. All we can do here is ease the passing. So 7 days after going to the hospital Sandra came home. Once home she asked why I called EMS again and I told her "I asked you if you wanted me to call and you said yes."

She said "Lee, I am telling you now, while I can still think, don't call again. I hurt and I am not going to get better. I am ready". She said her mind was clear, she didn't want to go to the hospital again. I promised her I would not call and we held each other.

The next two weeks I had to change her, give her a bath, cook, set her meds out. It is nothing special, it was what husband do. I saw her eyes grow dim and she started to forget lots of things. Then one day I had her in her chair sitting at the front door so she could look out. I took her a glass of milk and she took it and dropped it. I asked if she wanted to lie down and she said "I better". I took her in to bed and laid her down, She never spoke another word. After a couple of hours I went and told my sons I think your mom is going to die today. He called in to his job and told them he was not coming in. Night rolled around and she had not spoken or moved all day. In face, she didn't even have a BM. I saw her breating getting shallower and shallower and felt like calling EMS again but I remember what I had promised her. I laid with her, sang hymns softly to her and watched her die. My demon, how could I have done such a thing.

My bishop from long ago had told us when the time comes don't call EMS, their job is to bring you back. Wait before you call. Let time pass so that they will have no reason to try. So I waited about half an hour and called 911 and told them my wife and died. They wanted to know if I wanted EMS and I said no, just the police. Well, EMS drove up and 2 tech rushed in and I told them she doesn't want you. They told me it was their job and unless I had a signed paper saying that is what she wanted they had to try. I told them the paper was at her doctors and they said they had to see it. I told them no way. Just then their Captain walked in and wanted to know why they were not doing anything.. They told him I didn't want them to do anything. He looked at me and said, "sir, let me hook up this EKG, if it is flat we will respect your wishs." I said ok and it was flat. Her temp was low and they asked why I waited to call and I told them it was her wish. By this time the police were there and they called in to the station and they received a callback saying the medical examiner wanted the body to rule out foul play.

To this day, I asked myself, maybe I should have called. What if I had called, I might have had her a little longer.

The one thing that has kept me going is, the night after Sandra died I was laying in bed. I was very sad and sinking into deep depression. It was as if a darkness was coming down on me. I reach out and took her pillow, it still had her scent on it and held it and breathed in her scent. Then I heard her voice, "Lee, I am ok. I don't hurt and I can breath. I have lots that I have to do but I have to stay and comfort you till you understand that." I told her I understood and then I felt her spirit withdraw and I felt a calmness come over me.

It is those words that keep my demons at bay, but at times, they get to me.