I am going to do something that I have never done – I am going to write a series. This will be simultaneously cathartic and extremely difficult. I am going to chronicle what is was like taking care of my Mom from a year ago today, June 28th to July 13th when she passed away. Many things that will be written have not been shared before. I am doing this for myself and for the benefit of anyone else who might be going through the same thing. So here goes…
Tuesday June 28th, 2016
A year ago today my mother went into the hospital and never recovered. She had coronary artery disease and her artery was over 95% blocked. She kept putting off going to get it fixed, said that she didn’t have time. The last discussion we had about it was that she refused to get the procedure done until after the family reunion, which she and Dad were hosting.
She was so weak and frail at the reunion that she could barely walk, barely move, barely function. She was suffering from excruciating pain, and when she fell, she struggled to get up she was so weak, but refused to let anyone help her. So we were forced to watch as she squirmed on the floor. It broke my heart.
She was 75lbs when she went into the hospital. She had been wasting away for three years, and now it was at the critical stage. She refused to get help so all I could do was watch her get smaller and smaller, knowing what happens to the human body as it slowly starves. what I would find out later was that she had severe COPD that had never been diagnosed, which often leads to failure-to-thrive. She was at the point were she had Marasmus. She would eat maybe a few bites a day, if that. What we did not know at the time, is that she had refused to eat for so long, that her body had lost its ability to synthesis protein, so she literally could not eat by that point.
I met Mom and Dad at the hospital. I was to watch over her, stay with her while she stayed in the hospital to make sure she was OK, had some company and was being taken care of. I arrived and she was even smaller than she had been the week before. Her arms were maybe four inches around in diameter. She was so weak that she could barely speak. And she seemed melancholy, like she knew something that we did not. Sometimes she looked so sad.
At this point her mental state was much like that of a child. And she would look at me and ask simple questions and smile at the answers. She was amused by small things, like the pen that one of the doctor was holding, or a tie he was wearing. As the doctors spoke I could tell that her once sharp mind was baffled by what was being said. She would look at me with big scared eyes, and I would smile and reassure her that it would be OK. She would look at me, wide eyed and nod, her vulnerability nearly palpable. Sometimes I ssw glimses of rhe old Mom – sharp mind, quick wit and talkative. But she was just so exhaustrd from malnutrition that her thinking was not clear most of the time.
I would gently help her sit up, or get comfortable. I made sure she had enough blankets and arranged her pillows so she could sit and see the TV. I got her water and sometimes coffee. I did for her as much as she would let me, her being so independent.
She would pick at the covers, takw them off, tjen want them back on. She qoukd cinstantly re arrange them. Ahe would pull at her IV tubes, or keep picking at the IV entry on her arm. She would ask if it was day or night, ask what day it want to k ow when she was going home. Want I did not know was that she was going through what is called terminal agitation or restlessness. I also didn’t know that it would get worse. I would try to keep her from fidgeting, or pulling put her IV. I was patient, and just kept telling her no, you can’t pull that out, you need to leave it alone…she would smile and say ok, just like a child.
I went to the store to pick up a blanket, , pillow for myself and a little stuffed animal for Mom – an owl with big eyes. When I gave it to her, she just beamed like a child, and stroked it. I told her the owl would watch over her with his big eyes, and make sure she was safe. She just smile and stroked the little stuffed toy with her thin hands.
She had sores in her mouth from the effects of severe malnutrition. She could barely stand anything in her mouth. I called one of my best friends who has worked in a hospital all her life, she told me what to get. Every few hours I would have mom rinse her mouth with this solution, and she did so with trust and hope of getting better.
I called my friend back later that night to thank her, and she listened to me sob for about an hour as I told her Mom’s condition and my fears about her dying. I wasn’t prepared for this. I was alone. How could I handle this alone? I was so scared. I ran back to the hospital room and threw up several times. I threw up through out the night as well.
Mom was so small, her waist was between 16-17 inches, as best as I could tell. When I would hug her, it was like hugging a 4 year old. That was how tiny she was in diameter.
Dad and I stayed with her that afternoon, Dad refusing to believe how serious her condition was. She needed to eat, but she really wasn’t that bad, he told me over dinner, even though I could tell he was a worried. I could tell her was lost as well, and I tried to comfort him too. We are and I talked about everything that might make him smile. I asked him questions, asked how he was doing. Dad, always being stoic, said he was fine. He was of that generation that didn’t talk about feelings or admit fear of any sort. It is hard to comfort someone like that. But I tried.
Dad would get cold in the hospital room. The nurses said it would help Mom breath better if the room was colder. So he would go outside to warm up. I balanced my time between going outside with Dad and sitting with Mom at her bedside.
Dad went before dark, and left me to watch over Mom. She and I settled in for the night and I just sat with her, talked and listened to her tell me about things I didn’t understand. I sat in the bed with her and played with some cards, watched the news, made jokes and just said anything that would make her smile or might comfort her. I held her hand, stroked her hair, told her that I loved her, and then watched her as she slept. I just wanted to hold her and rock her to sleep until she wasn’t sad anymore.
And I prayed. Prayed that she would not stoke out, have a heart attack or die on the table during the procedure the next morning. I didn’t sleep much that night, as I stayed awake to make sure that Mom did not die. I could tell that the nurses were worried as well, as they would come in and check her vitals every 30 minutes.
And that was the first day. Worse was coming, I just had no idea how bad.
Today I just remember how scared, fragile and vulnerable she was. I remember her eyes. And I remember her voice trembling. I remember her trying to be brave, but she was so tired.
Today I am exhausted too. It has been a long day full of demanding work. I look back in that day a year ago, and how much has happened since then. And I miss my mother. But today she sent a sign to let me and one of my best friends who has been watching out for me as of late. She is close, even if I cannot see her or touch her.
I am thankful for those who have compassion and understand what the next 16 days will be. Compassion is key, and the good thing is that it is free. It flows from God himself and is for is to give to others. Support, kindness and love are what makes humanity work. And I have the best friends and the best support system. I am truly blessed, even through the pain and emotion of the coming days. It is something that can never be taken for granted. My Mom taught me that.