Friday July 1, 2016
This was the first full day of taking care of Mom at home. She slept all day, would wake up only for about 30 minutes at a time, drink her liquid protein that I was desperately trying to get into her body, and go right back to sleep. She was so weak that she needed help to sit up. She was sleeping too much, I thought, and not getting stronger, but seemed instead to be getting weaker. But I would wait to see how she was doing the next day before making judgement.
That day I talked to Dad about her regular doctor and was shocked to hear that he had said that there was nothing wrong with Mom other than her artery being blocked. “She just needed to eat more,” Dad said they were told. When I said that I was going into town, they made me promise that I would not say anything to their doctor. I promised but had my fingers crossed. There was too much anger at that man to keep that promise that day.
As I rode the 30 minutes into town, I could feel my blood boiling at the same time my heart was breaking. I arrived at his office and requested to see him. In about 20 minutes the receptionist led me to his office. His desk was covered with files and no computers in were in the office at all. They had not upgraded to that level of technology yet. Everything was still kept up and written by hand. A country doctor like that might sound charming, but it’s downright scary when it’s your parent they are taking care of.
I sat down and asked him point blank:
Please tell me, how a woman in this day and age, who lives in this country and who has a regular doctor is allowed to get down to 75lbs without her doctor noticing that there is something wrong? Please explain that to me because it sounds an awful like medical negligence.
This man was well into his upper 50’s, maybe early 60’s and I do not usually speak that way to my elders. But the anger swelled inside me to the point where I needed an answer. He needed to know that there were people who loved this woman who do not find it acceptable that she was allowed you get to this point. Aren’t medical doctors supposed to help people stay healthy? Aren’t they supposed to find out what was wrong with the patient, not just ignore the symptoms?
As expected, he was a bit defensive. He told me that he was a great doctor, had been practicing for over 35 years, and cared for his patients. He also told me that my mother’s weight issue and malnutrition was due to the fact that her cancer was back and she was drinking wine instead of eating.
I informed him that he had done every test on her and nothing showed that the cancer was back, and she drank because of her excruciating back pain that he refused to fix. I didn’t say anything else after that, even though he responded, because it was clear that he had done the best he could and that arguing any further would do nothing constructive. I made that observation after he admitted he did not know how to Google her symptoms because he did not have a computer.
I stopped by the drug store on my way back to get a more high protein items. A voice inside my head told me not to buy a lot because she would not be around to eat them. The thought ran through my head lightning fast and I immediately chastised myself as I choked down tears.
I spent the rest of the day taking care of Mom, taking her vitals, making her drinks of protein, and cooking for Dad. And praying.
I remember calling my then boyfriend and crying to him…I don’t think I can do this, I don’t think I am ready for this, I can’t do this alone. How do I do this? I am so scared I am terrified, I am exhausted. I don’t know what I am doing, I am not a doctor. What if I do something wrong? What if I miss something? What if I do too much or too little? This is so extreme, it is literally life or death, how do I do this? He would listen and calmly reassure me. He would tell me that I was strong and could do whatever needed to be done.
His voice brought me so much comfort. I was madly in love with him and loved him even more for being so supportive. I could call or text him anytime, he would be there. And it was OK that I was completely freaking out. He was here for me. He would be my rock.
I also called the man that I had lived with in New York. He had been in the family for over 20 years, so he needed to know the situation. It had been 11 years since our relationship ended, and we had a loose friendship. We also always understood how much each loved the other’s family. He loved Mom very much and would want to know that she was this sick.
As soon as he answered the phone and asked how I was, I broke down and started crying. I could barely speak. This was the first time that I had told anyone how bad it was. I knew I would have to call my sister, and I figured this would be good practice. Yet I could not speak. I could not get any words out. I would open my mouth and try, but all that would come out were sobs and squeaks.
I finally was able to get myself together and I unloaded on him, all of it. How Mom and been wasting away for years, how I tried to warn her and everyone what Anorexia does to the body, how it slowly kills you if you do not get any help, how Mom did have a problem. How that was why she had sores in her mouth, why her hair had gotten so thin, why her voice was so horse, why she had lesions on her cornea (lack of Vitamin A), how that is why she was so weak and had no stamina anymore, how that is what was happening to her memory and motor function. How that is why her skin was so dry and flaky and why there were sores coming up on her face sometimes. No one would listen, they all thought I was being dramatic, but here it was staring me in the face and I had no idea what to do.
I was talking fast and had started sobbing again, and had to repeat several things over because he could not understand. He talked to me for a long time. He had known me for 30 years, and when he said if anyone could handle this it was me, I felt like he meant it, even tough I myself did not believe him. I was falling apart. I was terrified. I did feel better when we got off the phone, thanks to his reassurances. Someone who knows you for that long knows the things to say because they know you. They know who you are deep down.
My sister called the house a short time later, and I told her what was going on. She seemed calm and rational, and didn’t really think that it was all that urgent. After all, Mom had been sick for years. She would come down in the next few weeks to check on her and help out. I tried to tell her there may not be that much time left.
Some neighbors stopped by that day as well. They were very concerned about Mom as she tried to speak to them but could not hold much of a conversation. She tried to say that she was fine, but they could tell better. They didn’t stay long, just long enough to say hello and make sure that everything was OK. I walked them out and I could see the knowing in their eyes. I told them that Mom was not doing well, and that I did not think much time was left, but to please, please pray for a recovery. They told me had they had been concerned about Mom’s health for about 2 years and had been watching over them as much as they could. I remember thinking that I wish I had known.