Our third year did not start out as well. A couple of weeks into it my mother began throwing up, something that is very dangerous with a trach. Anything she swallowed, even water, just came right back out. She seemed to have an excess of watery secretions coming from her lungs too, and I worried she may be aspirating. Then I thought it might be her new osteo medicine, a possible side effect being irritation to the esophagus. Next I thought maybe something is wrong with her trach. We took her to the hospital emergency so a Respiratory Therapist could check it out; she could find nothing out of the ordinary with her trach and said we should get her doctor to schedule a barium swallow test for her in the morning. And sent us home. THIS should have never happened, but thanks to our totally screwed up medical system there was nothing I could do. First of all, my mother was elderly with a lot of serious medical problems, she hadn't been able to keep anything down for about 2 days now; she was dehydrated. They wouldn't admit her unless a swallowing test was done, the house doctor could not order it, only her family doctor could, AND not till the next morning. Home Care is not allowed to attach IV's at home. So, totally frustrated, we went back home and hoped we could make it to morning.
The next morning, after getting ZERO sleep(I was scared she would throw up in her sleep so I watched her all night), I called her doctor and he met us at the hospital. They wheeled her off to do the barium swallow test and when they brought her back I thought "Oh God...NOW what is wrong?" Barium swallow tests involve drinking this white chalky stuff while machines, like xrays, track it. She had white chalky barium leaking out of her trach!! Her lung specialist said she couldn't swallow and would have to be admitted, so a surgical procedure called a scope could be done. Then he proceeded to tell us there were no beds available so she may have to be transferred to another hospital. I felt....more than beaten. I was so tired and stressed to the max I feared getting up from my chair would cause my knees to give out.
We sat...and we waited....FINALLY many hours later we were told a bed was available in that hospital, much to my relief, and after my mother was settled in her room I told the nurse I would be staying with her and could I please get a cot. By this time our nursing shortage in wards was just TOO much for me and I knew she would get little or no care. It took a day and a half to get a commode brought to her room(she had an IV pole, a MUCH too short length of oxygen tubing because the nurses had no time to bring more, so making it to the bathroom was precarious to say the least), but only 2 seconds to get a cot for me...I just shook my head. It meant one less patient they had to look after. When the night nurse came in during the night and told me she was glad I was there because anything to do with suctioning and mucous bothered her....well I knew I did the right thing. WHY would a person go into nursing if suctioning and secretions bothered her?? Yet here she was, working on the surgery ward of all things!
Next morning her doctor came and explained that they were concerned she may have cancer, the scope procedure that would have to be done to get a look involved sedating her and was extremely risky for someone with her conditions. He booked it for the next day. CANCER!! I have come to loathe that word! I knew my mother could NEVER make it through any cancer treatment, and surgery was out of the question. How I made it through that day and through the night I have NO idea...I think I was in a daze. I felt so helpless. I made my husband stay at the hospital that night and we both sat up and worried. Early the next morning the surgeon arrived and we all went down to the room the scope was to be done in. It was a quick procedure, lasting only about 5 minutes, but let me tell you..that 5 minutes seemed like an eternity. The surgeon came out, he put his hand on my husband's shoulder and gave us the good news...NO CANCER! Of course my typical response was to start bawling...*LOL*...we both cried...we were ECSTATIC!
What they did find was she had what is called a "corkscrew esophagus", which was spasming; another complication due to her severe osteo and scoliosis. A new medicine was prescribed to control the spasms, she was slowly put back on foods(we would have to now stick to easier to swallow things), and after a couple of days she was released.
Things seemed to go slowly downhill after that..with all of us. My fatigue was catching up to me, my husband was different somehow, and my mother started to change too. Her appetite was not as good, she was losing interest in things she liked to do, more and more smaller things affecting her health started creeping in. I could see even a visible difference in her; her osteo seemed worse, she was becoming argumentative if I would tell her to drink more or exercise. She slept more and struggled more doing the simplest of things, like dressing. Deep down I knew what it all meant. Her body was getting tired....REAL tired. I am a realist and knew that one's body can only take so much, and I knew her body had taken so much already. I cannot even put into words the frustration I felt, and yes...the anger...and the sadness. So many times, after watching her frail body, which was becoming noticeably thinner, struggling with something, I would find myself in the basement or outside, crying my eyes out. There was no way I was going to let her see me upset, it would only have frightened her. But the sheer helplessness I felt, was some days more than I could handle.
What used to be stress I felt when my husband would go to work now turned to fear, I woke up fearful every morning at what the day would bring. I checked her breathing constantly, I stared at the vein in her neck(congestive heart failure symptom), thinking it looked bigger than usual(my imagination?..I don't know), I pressed her swollen feet checking for pitting several times a day. I nagged at her to deep breathe, I nagged at her to eat, I nagged at her to drink. I knew she was losing her will to fight but I was in deep denial. I think my husband sensed it to, and I know NOW that that is why he was becoming more despondant(for lack of a better word)....he was not only worried about my mother but worried about ME!
In late September we all caught colds, and my mother had thicker secretions. I got an antibiotic prescription for her, but it didn't seem to make any difference...her secretions just stayed thick and her breathing just was not...right. The nurses couldn't hear anything out of the ordinary when they listened to her lungs. My mother complained a lot of being tired, and she had almost no appetite. Even lifting her arm to reach for something tired her badly. I still hoped the antibiotics would work and that she was just having cold side effects. I certainly was tired from my cold. Then one night she went to bed and just could NOT breathe lying down so we got her sitting up and did deep breathing exercises with her. She wanted the trach mask off and the nose prongs in thinking that would help. It didn't. Same thing the next night. The next evening she couldn't breathe well even sitting up and NO amount of trying to settle her breathing with deep breathing would help. Her lip color was lighter(we'd been trained how to check lip and fingernail color to tell us oxygen levels), and she was becoming quite agitated. I called 911 and paramedics arrived. Her levels were down, so before transporting her they used the nose prongs AND the trach mask to pump oxygen into her, and we all set off for the hospital...not our usual one as their emergency ward is only open till 8 so I had to choose another hospital.
We arrived and watched them bring her out of the ambulance...she was literally fighting for every breath now. They whisked her right into a room. And we were left to sit in the waiting room...I could have SCREAMED! That "not knowing" feeling was almost too much for me and I thought I might surely have my nervous breakdown right there in the waiting room. Finally a doctor came out and took us into one of those DAMN Quiet Rooms to tell us it did not look good, and what are our wishes? I glared at him! I do remember mumbling something about doing everything possible. To which he quietly tried to explain something about the elderly being treated with dignity..blah..blah...blah...I did NOT want to hear it! They admitted her to ICU and we were allowed in to see her, they'd given her a sedative that hadn't kicked in yet so I got to see more of her chest heaving for air. She was on oxygen...WOW! Was she on oxygen! It was pumped to 10 liters through the nose prongs, 40 something through the trach(at home she was always on 2-3 liters), the machines she was hooked up to, and which we learned to read during her first hospital stay, showed her heart acting kind of funny, her blood pressure dropping...the nurse was kind enough to show us her lung xrays....her left lung wasn't visible at all, just the tip of the right one could be seen. Then she told us we should go home, they would call if there was any change. I glared at her and said "Oh sure, I'll really get rest waiting for the phone to ring" and stomped off.
We did go home...they did call...4 a.m., to inform us they had to ventilate her again and we should come. We rang from the ICU waiting room when we arrived and were left waiting there for almost an hour...I have come to think of these waiting rooms as one's own little piece of hell! A doctor and a nurse FINALLY came; they'd had to shock her heart a few times, her blood pressure was dropping, and she was in a coma. They could not medicate her to try to reverse the coma because they couldn't stabilize her...and again that damn question..."what would you like us to do?". I was unable to speak..no words would come...the overtiredness and stress kicking in at an alarming rate. I remember my husband kneeling in front of me...searching my face...and he quietly said..."I don't think either of us want her put in any more pain"...I nodded...He turned toward the doctor and told him this. He told the doctor to keep her comfortable...that was all we asked. I nodded again...still unable to speak and glad my husband, who I knew loved my mother as much as I did was able to help me with this decision. We knew if any sort of resusitation was attempted it would only break her already fragile bones and 99 3/4% of the time it does not work anyways.
Oh God!!...then they told us we could go in to see her if we would like..now there is a decision that is easy...Care to go and look at your beloved mother in a coma? As upset as I was I just KNEW I HAD to go in there. I HAD to say my good-byes or forever have it eat at me. I slowly entered her cubicle and looked...she seemed so peaceful, she wasn't fighting to breathe, the nurse explained the bit of blood on her neck was from changing her trach to a cuffed one so they could ventilate...then she left. We both said our good-byes..... The nurse came back and told us we could not stay there, so we left the hospital...there was nothing more we could do. The next day at 6 p.m. we got the call....she had passed away.
I find solace knowing she is in a far better place....pain-free....her suffering over.............................probably walking through fields of flowers.......her faithful dog Prince by her side.....................................
~~~~~In the rising of the sun and in it's going down we remember them; In the blowing of the wind and in the chill of winter we remember them; In the warmth of the sun and the peace of summer we remember them; In the rustling of the leaves and the beauty of autumn we remember them; In the beginning of the year and when it ends we remember them; When we are weary and in need of strength we remember them; When we are lost and sick at heart we remember them; When we have joys we yearn to share we remember them; So long as we live they too shall live, for they are now a part of us we remember them~~~~~
