This is the story of the 16 days spent with my mother before she passed away. There are many things in this series which I have never told anyone or written about before. This is a labor of love, honoring my mother and her struggle. It is a way to document what happened and how and maybe help those who are going through similar.
This series is hard to read, as it is honest in it’s searing pain and confusion felt at the time. It has been freeing and cathartic to write this series and I hope that it touches you, makes you think and makes you feel. Use the drop down menu to read each day.
Hug your parents, ask them questions about their lives and most importantly, tell them you love them.
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 blesssd, 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.
Wednesday June 29th, 2016
Mom went into Surgery early that morning. They took her for prep at a little after 5am. She came back a little after 7am. They said she did good and her coronary artery was “as good as new.” But they warned her over and over that she would have to consume large amounts of protein in order to heal from the procedure. If she did not, she would continue to waste, not recover and she would die.
She nodded her head and obediently said that yes she would eat. I begged them to give her an appetite stimulants, and they did. I did not know that by then it was too late and looking back, probably did more harm than good.
Dad arrived shortly before she came back from surgery and I sat with him while he worried. I worried too, silently praying that she survive the procedure.
Looking back, I am not sure why they decided to do the surgery on her, other than they said that she would likely have a stroke at any given second. But she was less than 75lbs at that point. The staff was very concerned though. They never said anything but their expressions said it all. They had that concerned-not-sure-if-she-will-survive-but-Ican’t-say-anything look that hospital staffers get in situations like that. They checked on her constantly, taking her vitals, writing on the chart, their lips pensed as they checked her circulation and oxygen levels.
I don’t remember much more about that day. It is a blur of taking care of both Mom and Dad, making sure they both had what they needed. I remember calling my then boyfriend several times in tears, terrified of loosing Mom. He was kind and compassionate then, and listened to me sob, listened to me talk about Mom’s condition, and reassured me that it was going to be OK., he asked several times if there was anything he could do? Or if I wanted him to come down. I told him no, because really, there was nothing to do but wait…and take care of two elderly people.
How much he helped and how much I appreciated him, he will never know. I had no idea what I was doing, other than watching over her. But I knew that more was coming, but I didn’t know what. There was this foreboding that was inescapable. Just hearing his voice, hearing him say it was going to be OK, whether it was really true or not, was so comforting. No matter how strong we are, we always need love and support.
I had a lead ball in the pit of my stomach and a pounding headache the whole time I was there. There was a dread in my soul. I had not slept at all that night. Maybe on some level I knew that she would never recover,t ah she would not ever be herself again.
I felt angry, scared, terrified, depressed, needy, and very aware that I was in charge, and did not want to be. I wanted to crawl into my boyfriends arms, be told that mom would be OK, wake up and know that she was back to normal. I wanted to see her smile, laugh, get stronger and be able to live a better life.
To be the watcher is a privilege. Because you are being trusted to look after the best interest of the loved on there. That doesn’t just mean making sure that the pillow is fluffed, it means talking to the doctors, nurses, making sure you understand all the instructions, what every is doing, what is in the IV, what medications and precautions are being given and taken. It’s calling other family members and keeping them up to date on how things are going. It;s doing research to make sure that everything is being taken seriously and nothing is being overlooked. it is something you do for those you love.
Dad and I ate dinner that night and for the first time, he admitted he was scared. I told him I was too. We sat there for the next few minutes, in silence, eating Bar-B-Que. He left again to get home before dark and i stayed with mom. She had been sleeping most of the day, only waking up a little.
I prayed she would survive through the night, and set my alarm to make me up every 20 minutes so I could check and make sure she was breathing. I had nightmares when I did sleep.
Thursday June 30th, 2016
This was the day that Mom was released from the hospital. They checked on her early in the morning as the doctor made his rounds. He said they would release her that afternoon. I was praying that they would continue to keep her so that maybe she would have a chance to get better.
I talked with the doctor and asked about Mom’s nutritional status. I asked them to explain to Mom what would happen if she continued to not eat. They said she would not heal, her health would continue to go down hill and she would die. I was adamant about her listening it the doctor, because I still thought that it was her choice to refuse to eat, that it was her fault. I found out later that it was not. I asked them to prescribe an appetite stimulant to help her get back into the habit if eating. And they did.
I listened closely and took notes for her aftercare. What to expect, what to have her do, what to watch out for and when to call a doctor. And off we went to go home. I remember them telling her that she would have to consume large amounts of protein in order to heal and survive because she was so malnourished. She would need protein shakes every few hours. And a product called Rejuven that is for recovery in tough nutritional medical situations.
I remember getting her settled in at home. She was so tired that she just wanted to sleep on the couch and recover. While she was asleep I went to get her prescriptions filled, and went to several drug stores to gather Rejuven, and all the protein shakes, powders and bars that I could find, which was not easy. First they lived in an extremely small town. Second Mom hated anything sweet. So it could not be chocolate, could not be peanut butter, could not be vanilla, strawberry or any other pleasant tasting thing. And it could not be too thick or grainy (all her requirements for her to consume the products).
Do you know how hard it is to find flavorless, high protein products? Everything that had adequate protein, calories and nutrients had some kind of sweet flavor. So I tried to get what seemed would be the lessor of all evils.
I brought all of it home and as instructed I fed her every few hours when she would wake up, or when i could wake her up. And she truly tried the best she could. She understood that she had to do this in order to live, so she choked down the disgusting drinks I made for her, already high in protein, made higher still by the extra powders and potions added to them. Sometimes it was Enliven with extra protein powder. Sometimes it was Rejuven with extra supplements. She would drink them, smoke a cigarette and go back to sleep.
I would keep track of her vitals and take her temperature, blood pressure, pulse and check her MAP. They were all over the place, up and down. I started researching what that meant, then I started researching what happens and what to expect when death is near so I knew the signs. They would not come that day.
I told her I loved her every time she was awake, and I would try to talk about good things and wonderful memories. I tried to get her to talk, but most of the time she was just too tired.
I would take care of Dad too, making sure he ate and had what he needed. I would make the coffee, sit outside with him on the porch. Fix dinner for him. I would hug him and try to tell him it was going to be OK, even though I wasn’t sure of that either. But I didn’t have the heart…I wasn’t brave enough to say that of which I was afraid. It was as if I said it out loud, it would become real. But somehow if I could convince Dad, or at least make him feel better, I could do the same for myself.
And I prayed. And I cried. And I prayed more. I prayed for Mom, I prayed for mercy. I prayed for wisdom, strength and courage. I was lost and had no idea what I was doing, or if I was doing it right. I had no idea if I was making good decisions, so I just prayed.
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.
Saturday July 2, 2016
The second full day of taking are of Mom. I was getting tired as I hadn’t slept much, but Mom had been sleeping 20-22 hours a day. she was only up a few times to drink her protein drinks.
I continued to wake her up for meals and checking her vitals. I would check on her every hour during the night to make sure she was breathing. I noticed a pattern – deep sighs in her breathing, sometimes shallow and quick, sometimes far apart. I understood what that meant, along with vitals that continued to measure up and down. Her blood pressure and heart rate where the most volatile. Wide swings that scared me, but just within the safe range, except for that last reading that I took.
I researched and read everything I could find on severe malnutrition, the effects on the body, and anything that might help me figure out what to do.
In between taking care of Dad and checking in on Mom, I cleaned the house. I did the dishes, mopped the floor, vacuumed, dusted, fed the cat, did laundry, folded clothes. Anything to keep busy and also help them.. Mom had been so sick that not much housework could be done. And Dad, tried to do what he could but was never great at house cleaning.
Sunday July 3, 2016
The day was me getting up every to make Dad breakfast and try to make sure Mom was OK. She had only woken up twice the day before, only for maybe 20-30 minutes each. had a bad feeling but tried to push it aside.
That afternoon, she could not longer sit up, stand or walk by herself. She was hardly able to move she was so weak. And she started having uncontrollable diarrhea. It was terrible, as Mom was very dignified, but there was nothing that she could do. It happened several times and it was clear to me that this was not just a passing thing. This was very serious and I was terrified that what I had long been saying was coming true: That her body no longer had the ability to process protein.
I told her that she needed to go to the hospital and she agreed. Then I told Dad and he said no. He said that he did not think that it was that serious. Then I did something that I had never done, I yelled at my father. I yelled that his wife was very sick, she was less than 75lbs, that she could no longer walk, sit or stand by herself and that she could no longer eat…how much worse did he want her to get before she was taken that to hospital?
Then I yelled at Mom to get ready. She just looked at me and said OK, but that Dad would have to help her into the shower so she could get cleaned up first. She put her foot down and made it clear that she, being ever the dignified lady, was not going anywhere until then.
Almost two hours later we were in the van, waiting for Dad to find his keys and go to the hospital which was 30 minutes away. I remember being so frustrated…how could they not understand? These were two brilliant people. Dad was a rocket scientist who and designed ballistic missile systems, Mom worked in the Pentagon creating and deciphering secret codes. They had traveled all over the united States, they had great education, Mom had raised two daughters and 65 foster children – they understood nutrition.
While we were waiting for Dad to find his keys and get into the van, Mom asked if I was OK and why was I so frustrated. I told her that it took them 2 hours to get ready, and that if there was ever a real emergency, like a heart attack or such, that they were doomed. And then I felt a tear running down my cheek and I said softly, “Mom, I think you are dying.”
I will never forget her response. She simply very calmly looked out the van window and said “I probably am.”
We made it to the hospital, which was the size of a small clinic and really could not do much more for people than give flu shots or maybe set a broken arm. Mom’s doctor came and spoke with her for a little while, and made it clear to me that most doctors don’t care enough about their patients to meet them at the hospital. I bit my tongue since my mother made me promise that I would make peace with her doctor. He also told me that her nutritional and albumin levels were normal until then. He said they had been at around 3, which was normal. It was now at 1.2, which was not normal at all. There are so many things that I wanted to yell at that doctor, but it was not the time nor place. But one day, I will have my say.
Tests reveled that she had two types of Pneumonia, sepsis and some other issue that they could not isolate. They so they called for an emergency transport for her to the hospital in the next state over in Alabama. It was only an hour away and was her best hope for survival as it was much bigger than the hospital where they were.
I followed the ambulance there, they knew I would be behind them. They must have radioed it in, because we were going 85 or more down country roads in small town and I encountered police. I never knew and ambulance could go that fast, but they were driving to save Mom’s life.
Dad had to drive home before dark, then I waited and followed Mom to the hospital in Dothan. That was the longest hour and drive in my life, even though I was following the ambulance doing at least 80. We arrived at 3am.
Once again, I was Mom’s watcher, making sure that she was OK, that she was comfortable and had everything that she needed. I would talk to the doctor or hospitalist that night, I would answer the questions that she was too weak to answer. She was completely bed ridden at this point and was so weak that she could hardly speak. She could life her head up without help and she slept much of the time while the doctor was asking or explaining things. There would be a team of five doctors all total who would try to save her. This was the first night.
I did not sleep. I took care of her, talked to those who needed to be talked to, and prayed.
Monday July 4, 2016
Monday, the start of the week. This was the day we started to meet the doctors for the first time. There would be five in just a few days. I don’t even remember all of them. They started to run tests and consult with each other to find out what exactly was wrong and how to fix it.
But something really strange happened, something very unexpected. Dad and I would get very dirty looks from the hospital staff. They were very nice and professional, but I saw how they ere looking at us. And then it dawned on me: They think we did this to Mom. Indeed, there has been a few cases in the news where people had starved the elderly until death or close and lived off of the social security money.
It would take them a day or two to figure it out. But it was a terrible feeling to be given those looks int he meantime.
Dad arrived that morning and we met the ladies from palliative care this day. I think they called them in o talk with the family to assess whether we actually starved Mom, or if this was an illness. They asked a lot of questions. They said they would talk to us more after all the results were back so we could figure out a plan of action for Mom’s recovery.
This was the holiday I had been looking forward to. My then boyfriend and I had plans and I was so excited. I remember this day because it rained a large part of the day. I kept seeing all these wonderful pictures of my friends celebrating with their friends and family. And for the first time I was actually envious. They were out having a wonderful life and I was in the hospital room taking care of my Mom because she wouldn’t eat.
The appetite stimulant they had given Mom was working and she was actually eating I was so happy that I went into the bathroom and cried.
I was finishing up a writing assignment I was working on while Dad was there, but it was hard to work at it. There were doctors coming in and out, asking a lot of questions. Then there were all the nurses hooking up and h=changing the IVs, taking vitals and making sure when was comfortable. Dad was by her bed, and then he would go outside when he couldn’t stand the cold anymore.
I called my sister and other family members to let them know how things were going. I called a lot of friend, especially one who i a surgical tech and understood the terminology and procedures. I would take notes from the doctors and then run and call her to explain them to me.
I helped Mom eat by prepping her food opening drinks, running and getting her water or ice chip when she wanted them. Sitting in her bed and just talking, going down the the hospital.
By mid afternoon Mom was feeling better. They had pumped her full of fluids, vitamins, antibiotics and nutrients. She was sitting up on bed by herself, laughing, talking and even smiling. She wanted to hurry up and get better so she could go home.
She didn’t remember the ambulance ride over and kept saying that she flew in a plane. After a while I stopped correcting her.
Dad left again before dark so he could get home. I stayed and watched over Mom as she slept. I snoozed a bit too, but had terrible nightmares. I dreamt that I woke up to check on Mom and she was a skeleton. And when I went to touch he she fell apart into dust and was screaming. I woke up screaming as well.
And then I dreamt that my Mom had died and I went home and the place was empty. My boyfriend, who I was madly in love with had left and I was sobbing. I woke up crying.
Tuesday July 5th, 2016
It had been a week. A full week of no sleep, of tears of fear, of panic and terror, of prayer of more emotions than I could keep track of and can remember now.
I had tried to sleep but kept having the worst nightmares of Mom dying and my boyfriend leaving me. He and I had a huge fight right before I left, I was nervous and scared and picked fight. It seems that the stress of the situation was making all my fears surface in my dreams. I called him frantic at 4am crying. I was sobbing so hard that I could barely get the words out. I told him about the dreams and sobbed Please don;t lave me, the first time I had ever said that in my entire life. He reassured me that he was staying, that he loved me and that I had nothing to worry about.
This was Tuesday and Mom was continued to eat and getting stronger. They had sent a woman up to assess her and give her physical therapy to help her with her strength and walking again. This lady was tiny, maybe a size zero, but was strong as an ox. She picked my mother up and guided her around with one arm. She showed Mom how to do simple leg lift exercises and Mom liked them. She was joking around, smiling and had that lightning wit. For the first time since she had been admitted I thought that there was a chance she might survive.
I was making all of the medical decisions at this point. I didn’t want to, but Mom did not understand and Dad flat out said that he could not handle it. So they both looked at me. And I would talk to the doctors and take notes and call my friends in the medical field and ask them questions and I would Google. And I prayed. I prayed almost frantically with every extra breath I had, every extra second I had. I was acutely aware of what was at steak and why I had to make the absolute right decisions. Why there was no room very error. If I made the wrong choice and she dies as result, my family would never forgive me. And I would never forgive myself.
The doctors in Palliative care said that she was doing well, but would need to be in a rehab center after she was released to help her build up her muscles and strength. They warned that though she was doing good, it would be an extremely difficult recovery for Mom. It would takes months of her staying a rehab facility to again her strength and get used to eating again. She was 75, and what she was facing would be hard for someone younger, so it would be very hard for her.
We talked about getting her transferred to a rehab facility in Atlanta. Dad would live with us while Mom stayed at the rehab place. We could get her transferred to somewhere close. They began look fir places and told me they would have a list for me in the next day or so.
I called my boyfriend and explained the situation to him. Without even having to ask him, he stated, “Yes, they can live here with us. Bring them on up. Don’t even worry about me.” I was so relieved to have that kind of support that I just broke down into tears. I was so in love with him and thanked God that he gave me someone so incredible and wonderful I thought this is what it is like to finally have a partner that is sent from God. I could not believe that I was so lucky.
Relieved and thankful that Mom was going to live, I worked on my freelance assignment, or tried to anyway. Mom and Dad were so giddy together. Dad was giddy that she was doing so well, and Mom was giddy to see him and be feeling so much better. She was eating and laughing. She was almost getting up and walking by herself. She and Dad were like little kids, giggling with eat other and “tattling” to me little things that they were doing. I even got aggravated at them because I had to finish my assignment and I couldn’t write because they would not leave me alone for playfully tattling on each other. Looking back I wish I had been able to take more time to watch them be so playful with each other.
As soon as I was done working, that is exactly what I did. And we spent the rest of the evening laughing an being hopeful.
That night I almost slept well, and slept better than I had since Mom was admitted.
Wednesday July 6th, 2014
I remember this day for two reasons – It was the first and last time Mom got out of bed and walked around. It was also the day the last picture of Mom and Dad was taken where she was Conscious.
It was a great day by all accounts. Mom was feeling feisty, Dad was smiling, doctors were optimistic and she was doing really great in her physical therapy.
Tests had come back, she had double pneumonia, but the antibiotics seemed to be working and Mom was eating. I remember watching her tear into a piece of chicken. She was so hungry that her hands were trembling, and she didn’t wait to use her fork so she used her hands. I was so incredibly happy that she was eating, that she wanted to eat, that she had an appetite. Several times I went into the bathroom and just sobbed. But she couldn’t finish the chicken because her mouth was too sore. I had been giving her Ginga-Violet for her mouth condition due to the malnutrition and it had helped, but she still had problems. We would rinse with the solution several times a day. But this day, her mouth was just too sore. She she would settle for tomato soup.
I had slept at the hospital every night since arriving and only to either get food or to pick up more clothes from Mom and Dads place back in Donalsonville. I had run out of clean underwear, clean shirts, my pajamas were starting to smell and my socks could have walked the halls by themselves. I had tried for days to get a chance to run out and get more panties, but every time I was ready to leave another doctor would come in with another test result or another explanation. Dad would look desperately over to me, and I knew that I could not leave until after the doctor was finished.
Finally I was able to run out to the store. I saw the sun and had been outside for the first time in days. I listened to the radio loud, had the sunroof open and tried to clear my mind of the stress. Socks, panties, Pj’s, and some shirts and jeans. I was set and no longer had laundry that could walk in the hospital with me.
Thant day Mom got out of bed herself and walked all the way down the long hospital hallway and back. If she continued to do well, she could be released in the next day or so. My knees went weak when the doctor told me that and I nearly hit the floor. I was so overcome with emotion. It had been so close. I cried again in the shower that night. I sat in the floor of the shower, let the warm water wash over me and sobbed, thanking God with every being of my fiber. She was going to live.
This is the last picture taken of the two of them with her conscious, both happy about the news. She was saying “I love you” when the picture was taken.
Thursday July 7, 2016
Early that morning I heard Mom heaving, like she was going to throw up. She had said earlier that she didn’t feel good, and went to sleep early. So I was alarmed to hear the noises she was making.
When you are taking care of someone in the hospital, or a sick child, or sick love done at all, it seems like you sleep a lot lighter. You are aware of subtle changes in their breathing or movements. Maybe it is the maternal instinct, but it is almost like a 6th sense. I immediately turned on the light and grabbed a trash can.
I cannot remember if she was already sitting up in bed or if I helped her, but I held her as her body heaved from the vomiting. It came up deep from within, as it seemed like every muscle, every bone even, in her body tensed up. It was extremely painful for her and she would moan while heaving. I just held her as best as I could and told her it was going to be OK.
I called the nurse and told her Mom was sick and we need assistance. The nurse on duty was horrible and Mom did not like her at all. She was rough and did not seem to like sick people. The nurse said that they could not give her anything to help the nausea and vomiting until the doctor did his rounds and signed off on it. Mom was under ICU care, and even though her condition was getting better, they were still very guarded with her prognosis.
Once she started trowing up my heart sank. I knew what that meant even though I prayed for it not to be so. For the last two years at least,every time she ate well for 2-3 days, she would get violently ill. She would throw up, have diarrhea and cramp for the next 3 days. And she would loose sometimes 10 pounds during these spells.
Her violent dry heaves and vomiting went on for another 5 hours. I held her , held her hand, stroked her hair, got cold wash clothes for her, helped her sit up and down, grabbed the trash can for her. It broke my heart to see her like that and not be able to do anything about it. I don’t think that there is anything worse that seeing your loved on in pain and not being able to stop it. Completely and utter helplessness.
Mom was completely exhausted and could barely sit up on her own at that point. I wold help her and hold her up as she sat on the edge of the bed to throw up. It was so putrid as it was coming up from her pancreas. To this day I have never smelled anything more foul. She would ask several times if there was something the nurses could give her and I had to tell her that not until the doctor came in.
After five hours I called the head of Palliative care and left a message. I think her name was Joanne. I told her that I didn’t care what had to be done, who I had to talk to or how much noise I had to make, but that no one, no doctor, no one had been in to check on my mother. She had been in excruciating pain and vomiting for over 5 hours. They had one hour before I started making a lot of noise and I didn’t care if I had speak to the chief of staff himself, one way or another someone was going to help my mother.
Shortly after that the doctor came in and gave her some medicine to stop the vomiting. Within 30 minutes of that she was resting. They would do more tests to see what happened. By this time she had a cardiologist, a circulatory doctor, a nutritionist, a Gastroenteritis, and a few others. They were all trying to figure out what was going on and how to save her.
But in hind site, what was wrong was that she was dying of malnutrition. It wreaks havoc on the body when it gets to that point. There are so many vitamins and mineral deficiencies that are going on in the body. Things you don’t even think of like lesions on your cornea from a lack of vitamin A. Her hair was thin and breaking, her skin was thin, her eyes were getting l=cloudy. Her mental state was failing and she would have terrible mood swings. She would have dry cracked skin and sometimes sores would come up. A month or so before her went into the hospital, she lost the use of the lower part of her body. Her nails were discolored…So many things going wrong.
Her little body was giving out. She had lost the ability to synthesis protein, so there was no nutritional value in any food for her body any more. Her body simply did not know what to do with food anymore and would reject it.
They told me that if they could not find what was wrong with her that she would die. She was too weak, her immune system was giving out, the pneumonia was getting worse even with the 4 strong antibiotics they were giving her through IV. She would not last, they told me. She was resting, Dad was not there and I had a lot of decisions to make.
My hart sank into my chest. How could it change so quickly? I wanted to cry but bit my lip until the urge went away. Panicked, I went to the front desk to ask about the chapel every hospital has. They told me to go down to another floor and I did. But at that floor they were remodeling the chapel and all they had was a little room with a few chairs for counseling. I said that it would do.
Once I got into that room I burst into tears as my knees hit the floor. What followed was the most sincere and heartbreaking prayer I have ever prayed in my life as I sobbed, heart pounding, nose running, mind racing. I couldn’t breath, I felt like I was going to vomit, I was dizzy and felt like I was going to pass out.
Oh dear God help me, I don’t know how to do this, I can’t do this, I can’t do this. I don’t know how to do this. I can’t lead this family into her death, I can’t do this by myself, I don’t know how. I am not strong enough. Dear God please, please, please please please, I don’t know how to do this, I can’t. I Don’t know what I am doing. I can’t make these decisions, I am not a doctor, I am not that smart. I don’t know what I am doing God please give me strength, please guide me, I can’t do this by myself you have to be with me, you have to make me make the right decisions, I cant do this, I don’t know how to do this. Please please please God I don’t know what to do. God please let her live, please let her recover, she is my Mom, I don’t want to loose her, I can’t loose her, God please, please, please God, Please. I don’t know what to do, I can’t do this, I can’t do this I can’t do this. God make me strong, Please God Please, make me strong. I can’t do this, I don’t know how. God please. I can’t loose her. I don’t know how to be without my Mom. I don’t know how to lead the family into this. I don’t have enough strength. I don’t have the Grace for it. God please, please let her live, Please make that be your Will, please God please. I love her, please don’t let her die, God PLEASE.
I don’t know how long I as crying, praying, screaming and begging God in that room. But when I came out my face was red, eyes puffy, and my throat was rough. I was shaking violently, I couldn’t help it. I wasn’t ready to loose my Mom, I wasn’t ready to do this, make the decisions. But I had to pull myself together. Life doesn’t stop because you are to weak to handle it, so you just have to do the best you can.
I called Dad that morning and told him what was going on and that she was resting. I could here the worry and disappointment in his voice. At least she was here at the hospital finally when it happened, because now they can find out why and fix it,” I said trying to reassure us both.
After Dad arrived I had to get myself together and prep for a phone interview for a job. I was out of work and was looking for my next contract. So in addition to everything that was going on with mom and Dad at the hospital, I had also been fielding calls form companies and recruiters. Do you know how hard it is to do an interview while a loved one is sick? But the staff got used to my running around trying to find little quiet corners here and there for the business conversations. This company had already rescheduled the interview two times, so I knew a third would not be possible. I ducked in a hallway and did the interview, completely distracted and trying to focus.
The rest of the day was spent talking to doctors, praying and trying to make the right decision. The doctors said that the veins her abdomen might be blocked and that could be what the issue is. So they could go in and clear them out. Or they could administer a feeding tube. Neither Mom or Dad could decide. So I made calls to friends, did my research and prayed. A lot. And in the end I told Mom that if she decided to do a procedure, I thought the one clearing her veins would be the best one, but that it was her decision.
I will never for get this for as long as I live. She looked at me with big, round, innocent eyes and all the trust of a child, and she asked “Do you think I should do it?” In that moment, it struck me how much rust they had placed in me, how delicate the situation was, and the responsibility of the answer. To have someone willing to go through a potentially dangerous procedure just because you think it is what is best for them…that is extremely humbling. With my heart pounding in my throat, I swallowed hard and begged God for wisdom. And whispered, “If you do if may get rid of the pain.”
She nodded her head obediently and said OK to me. The looked up and said OK to the doctors. It was completely love and trust and faith in me. Because I wanted her to, because she didn’t want to disappoint me. Because she didn’t want to break my heart and tell me that she was tired, and just wanted to go home.
So they took her back a few minutes later to prep her for the procedure and I prayed, harder than I had every prayed before, that she survive. They had talked about the risk and how because of her weight and frailty, that it was risky. That if they didn’t think she would survive or if there was any trouble that she would die. And she said yes anyway. And I prayed.
And she came through it fine. She was a little sore but otherwise was great and they thought they were able to clear enough of her veins out in her abdomen that she might not have pain or issues eating. And I prayed.
I called my sister and we fought hard about whether or not she should come down. She said she didn’t have tie, she had to work and I shouldn’t be bothering her with something so trivial. She didn’t believe that that Mom was that bad. She accused me of being dramatic and exaggerating because I was tired. She told me to stop being childish and to grow up. I couldn’t believe what I as hearing. I gave it right back to her out of anger, exhaustion and sheer desperation of begging for help.
“We have to pull together for this to work,” I told her. “This is family, it’s Mom, you HAVE to help. I can’t do this by myself, I have had no sleep, I have been taking care of both Mom and Dad this whole time. I need a break, please, please come help me. Just come down and stay for the weekend, that’s all. As soon as I get back you can leave, please, I can;t do this by myself, You are my big sister, you have to help me. YOU HAVE TO HELP ME!” I finally sobbed barely able to speak.
I told her that if she thought I was being dramatic, come down anyway, prove me wrong. Because if I wasn’t lying or being dramatic, and I was right, and Mom died, then she would feel guilty for the rest of her life.
That night I had to leave to be in Atlanta that next morning. I had to sign paper work and take the employment drug test for a new job. Dad would stay overnight at the hospital and my sister would be there Friday night. Dad just had to handle 18 hours or so there by himself. I would rest, do laundry, repack and be back early Sunday morning so my sister could drive back and be at work Monday.
That doesn’t sound very long, but Mom was very sick and very needy. She needed help with food and water, and she had started to pick at the covers by this time. She would get restless and try to pull out her IV. She would mumble and talk about taking trips, seeing people who weren’t there and about just wanting to go home. When could she go home? She just needed time in the sun and some fresh air and she would be fine, she told the doctors. Every 30 seconds to -2 minutes she would need something, or need to be told not to pull out her IV.
She would have moments of clarity too, and she knew enough to know that she was starting to hallucinate. She would tell me about a little boy that would be in the room, and then look at me and say “But he isn’t really there is he? I am hallucinating aren’t I?” And I would gently smile and tell her that no, the little boy was not there, or at least that I could not see him. I did not know what any of that meant at the time.
I packed everything and left about 6 that evening, maybe a little later. I drive and picked up Mom’s cat, got a couple of energy drinks (which I never drink) and drove home to Atlanta.
I had not slept, I had not eaten, I had had no rest or breaks at all really since I had gotten there nine says before. I was exhausted. I got home, my boyfriend waiting up for me, and collapsed. He hugged me, we talked for a bit and I slept so sound in the safety and comfort of my own home, in his arms and out of shear exhaustion.
Day 11& 12
Friday July 8th; Saturday 9th, 2016
That morning I got up and went into the contracting agency through which I got the job and signed all the documents and tax papers. All the HR prep work was done. I went back home and slept once again. I slept most of the day, waking up only briefly to eat and go back to bed.
At some point, I got up and did laundry and tried to process the last 10 days. My mind was swimming and I was walking around in a daze. I also sent a lot of time in the phone trying to get Mom transferred up to a hospital in Atlanta, calling every contact and hospital person I knew to talk to in Atlanta and trying to coordinate with the hospital in Alabama. I was fighting as hard as I could to help Mom as much as possible.
I have no real memory of these two days. I know that I cried a lot, I know that my boyfriend held me a lot and let me cry and vent. I know that I had to have called friends and family. And mostly I know I slept, having had no really rest for the 10 days prior.
I do remember talking to my sister several times that morning and again around lunch time. My sister was confused and overwhelmed. Mom wasn’t eating, how could they get her to eat? I explained that her mouth was still sore so if she wouldn’t eat anything, get them to make her soup Tomato soup. When all else failed, she would eat the soup.
Mom was also showing signs of what I would know later as terminal agitation. Ever 3-7 seconds she would shift, move, try to get up out of bed, take her IV wires out, take off her oxygen mask. She would talk about strange things that didn’t seem to make any sense, she was restless, agitated, would constantly pick at the covers and see things that weren’t there.
what we also didn’t know at the time was that this is a natural part of the dying process, but no one told us that. So it just seemed very bazaar and unnerving. It seemed unnatural and we didn’t know what to do, how to handle it or how to make it better for Mom. It was one of the most helpless times and feelings in my life. I would just take a lot of deep breaths and say prayers to keep calm. My sister was not used to this though, and was a nervous wreck.
One question, my sister asked, as I heard the exhaustion and exasperation in her voice, “Does Mom need her dentures in to eat? Should she put them in?” I couldn’t believe what I was being asked. I just said softly “Yes, she will need to put them on.” I told her where they were and how to put them in if Mom couldn’t.
When I got off the phone my boyfriend just looked at me and knew that I was going to have to go back right then and not wait for the next day. So I packed up my stuff, loaded the car and was off back to Dothan AL. I got there a little before dinner time and Mom gave me a big hug, She made me promise that I would not leave her again.
I remember how shocked I was at how bad she had deteriorated while I was gone. But she had not been able to eat since I left and since her body had rejected the food. She was weak, had lost what seemed to be a lot of weight off her already tiny and frail frame.
I don’t normally post personal things, but this is different. It is with a heavy heart that I say that my mother, Genny Burch, is very, very sick and is not expected to make it. We will learn more from doctors either this afternoon or tomorrow. I don’t even know how to write this post. The staff at Southeast Alabama Medical Center have been wonderful, extremely compassionate and given her exceptional care. My father, James Burch, is being very brave, but is no doubt hurting. My closest sister in age, R, has decided to leave the situation and has no interest in participating, so it will be my father and me. I have no idea how to do this and am terrified. I don’t know how to do this. Please, please say prayers for us. Please pray that Mom has a peaceful passing, pray that my father be given strength and comfort, and please that I may have wisdom and courage as I make these decisions with my father. Most of all, please pray for a miracle. She has lived a very full life, been a wonderful mother, an amazing grandmother and even raised 65 foster children, She has truly made a difference in this world in so many ways. And if you have any wisdom or advice, please let me know, I need support and love. Thank you.
Sunday July 10, 2016
This was one of the hardest days of my life for many reasons. It was the day I truly found out that Mom was not going to make it.
Mom had been getting weaker and weaker and was having trouble sitting up by herself. We had been trying to figure out any way to save her. But she wasn’t responding. She was on 100% oxygen since we had found out she had sever COPD that had not been diagnosed. Her pneumonia was getting worse and they still could not find the source of another infection they had identified.
They had run every test on her possible. They had given her x-rays, MRI’s, sonograms, every blood test possible for everything they could think of. She was just so weak. And what they could do was extremely limited because of her sever malnutrition. They could not operate at all because she would not survive being put under. They could not do any more tests because the only ones they had not done would be invasive, and she would not live through it. They just kept saying, if she weighed more, there would be a lot more options.
By now she had not eaten on 4 days and had probably lost another 7 pounds or so. She was still smiling, but she was getting weaker. I remember her sitting up and she looked at me and said “I know I brought this on myself from not eating, but I just didn’t think getting better would be this…hard.” It broke my heart.
We had talked to the doctors and decided that maybe, maybe the next day she would pull out of it, but that more than likely she would not. Palliative Care came down and talked to me. Joanne said that we have to face the fact that miracles happen, but more than likely Mom was going to pass. That her body was so weak and it seemed that her immune system was failing. They would watch her and continue to give her fluids and antibiotics. The next day would determine it, but to understand that most people who were in the hospital for more than a week with pneumonia didn’t make it. We needed to start thinking about what she might want.
Mom was just getting more and more weak.
I called my boyfriend sobbing. My heart was breaking and I didn’t know what to do. He was very compassionate and reassuring. He tried to help but that is a heartache that cannot be helped. I called my best friend and cried to her. How do you prepare to loose your Mom, your best friend. She had lost her Mom, and so she talked about it in a way we had never talked before.
After the conversation with the doctors that Mom was dying and to pray for a miracle in the next day, my sister decided to leave. She announced that she had to get back to work. She did not have nay more time off and she did not want to loose her job. She she was leaving.
I just looked at her. “What? You can’t leave. They told us that Mom is dying, she only had a day or tow left. Mom is dying. You can’t leave,” I said. I could feel the panic and emotion rising up from the tip of my toes to my head, I could feel it coming is waves. I felt sick and dizzy.
“I need to get back to work. I am leaving, I am not staying. I have no more time off, and they will fire me,” She said again very matter-of-factly. “They will give you time off if you tell them Mom is dying. You will not get fired for that. You can;t leave, please stay. I can’t do this by myself. I need you here, you are my big sister. Mom needs you here and so does Dad. We need to be here as a family for Mom. Please don’t leave me, I am not strong enough to do this without you. Please stay for Mom, she needs to say goodbye too,” I desperately pleaded.
And then I did something I never thought I would do. I fought back and fought hard. I pulled a dirty trick to get her to stay. I looked at her and defiantly said “I am not going to let you leave me to handle all of this, You are part of this family too and you need be a part of this. I will not let you do this. So I am going to beat you to do. I am taking my stuff and I am leaving – going back to Atlanta. You can handle the rest of this. And if you want to leave, then YOU are going to have to be the one to tell Dad that YOU and leaving him alone to deal with Mom dying. YOU are going to have to be the one to leave him alone, and scared, if you decide to leave!”
I packed my things and gave Mom a long tight hug. I whispered to her that I was not really leaving, I would be in the parking lot waiting for Rita to stay. I would be back in a few hours. That was the last hug she gave me.
I left and went to the parking lot and sobbed. I didn’t know how to do this alone. I didn’t know how to do this if my sister left. I went to the Waffle House across the street for the first meal in in tow days. I silently cried as I tried to eat. I could see the window of Mom’s hospital room from the Waffle.
I was devastated. There are no words to describe the devastation, fear, sadness, terror of those moments. I went back to my car, called family and friends to tell them the news. I called my boyfriend to cry and tell him. Called my best friend who had helped me so much, let me vent and gave me incredible medical advice that helped me navigate and make good decisions when I had no clue. I was falling apart. My heart was breaking and I my head spinning.
After some time I called Dad to see how things were and if my sister had decided to stay. He said yes, he was staying and that they were good. I came back and told him later that I was just in the parking lot, I never and would never, leave them during this time.
My best friend K called and said that she wanted to come down, to see Mom and say goodbye. A few hours later she was there talking to Mom, holding her hand and saying how much she loved her. Her Mom and my Mom were best friends until her Mom passed away 3 years earlier. It truly broke my mother’s heart to say goodbye to her best friend. And now my best friend was saying goodbye to my mother. And Mom truly loved her like a daughter.
Mom was weak but tried her best. She was always proud and wanted to seem as well as possible to others. She talked for a while but then grew too tired and drifted off to sleep. K took pictures of me with Mom, took pictures of my holding Mom’s hand. We then let and spent the night over at the family compound leaving my sister and Dad to take care of Mom. She was sleeping almost all the time now, so it was an easy night for them.
I cried a lot at the family home with K. We talked of her Mom and mine. of old times and the things they would say to us. That night I tried to sleep but had terrible nightmares again. How do you sleep when your heart is breaking?
Monday July 11, 2016
I got drove back to the hospital early that morning, and watched the sunrise as I was driving. It was surreal and hard to believe. I knew that everyone looses their parents, I just wasn’t ready to loose my Mom so soon. I kept thinking that maybe it was a dream, but then I knew it wasn’t. This had been coming for a long time. I to the hospital and Mom was weaker and not really talking very much. She was tired and her eyes were sunken in a little more. Her breaths were more ragged. I was scared when I looked at her, but painted on a smile. I am sure if she was awake she would have seen through.
We had talked to the doctors and decided that maybe, maybe putting a feeding tube in Mom would help her. It was the kind was a tube snaked down through her nose. I knew that she didn’t want a feeding tube but my selfishness took over. If it would save her yes, let’s do it. Mom agreed because all of us wanted her to do it, not because she wanted it.
Soon after that decision had been made, the two women from Palliative Care asked to speak to My Dad, my sister and me. We went into an empty hospital room and Joanne carefully and em-pathetically explained the situation.
She softly but firmly explained that Mom was at a point where she probably wasn’t going to get better. They could do a peg feeding tube, but her on a ventilator, even on life support, but just because we could didn’t mean that we should. She explained that we had to think of Mom’s quality life that she had left, her dignity and what she wanted. She said that it was obvious how much we all loved her, and she had never seen a family fight for a loved one so hard. And as she was speaking to us, I noticed that tears were rolling down her cheeks. She truly cared.
She explained to us that Mom’s body was just too weak to survive to survive and life saving measures. That her body had lost it’s ability to synthesize proteins, so even if she had a feeding tube, her body could not absorb any nutrients and it would just turn into diarrhea and it would be a painful death. When she said that it clicked that that is what happened when I was giving Mom all those protein drinks in the days that followed the procedure. Joanne also confirmed that was why Mom would eat for a few days then cramp and vomit for the next 3-4 days. She told us that they would have needed to see Mom two years ago to help her, tat was how bad and how far the nutritional had gotten.
I think I was the only one not shocked. I had been telling the family that this was going to happen if Mom did not start eating, if we did not get her treatment. I had begged Mom for years to please go to a different doctor, a doctor up here, maybe at Emory where Dad was getting his chemo treatments for his liver cancer. I had set up appointments with nutritionist, counselors and any other doctor I could find at Emory that would talk to Mom. The one time she agreed to go, she refused to admit that there were any problems, and they could not treat her. For years I had been accused of being dramatic, of lying, of exaggerating and causing drama. I have never been so heartbroken to be right. I have never wanted to be more wrong in my life.
My sister and father were paralyzed. I asked a lot of questions because decisions had to be made. And whatever the decisions were, we had to be as comfortable with them as possible. After lengthy discussion of what Mom would truly want, of what was possible and mot, of what is ethical and right and what would break our hearts, it was decided to take Mom from “Get Well Care” to “Comfort Care.” They would keep her on Antibiotics, because miracles could always happen, but if that was not the case, then she could have her dignity. She said they would change Mom from the oxygen mask to the cannula because it would be more comfortable for her. They promised that they had medicine to help with the “air hunger” that mom would feel. They also had medicine to help with the “death rattle” breathing.
My sister and father left to make phone calls, and I went into the room. The nurse bad nurse that Mom was afraid of had already put a green feeding tube down her nose. Mom looked miserable. I looked at Mom and apologized and told her that I never should have said she should try the feeding tube and that they would take it out immediately. And the nurse did. She pulled it out of her nose very rough and I could tell that it hurt Mom. She looked at the nurse, fear in her eyes and said “You have no compassion.” My mother had incredible insights into reading people, and she had yet to be wrong. That startled me and I swore I would watch over that nurse like a hawk.
After that Mom turned to me and asked where we were, and I just told her the doctor wanted to talk to us as a family to make sure we had a view of the whole situation. That she didn’t need the feeding tube and that we were going to make her as comfortable as possible. That got her attention. She looked at me, smiled sadly and knowingly, pointed her finger at me and said in a Don’t-try-to-fool-me tone “I know what that means.” and punctuated the sentence with her finger.
I knew I had to have the conversation with her, but wanted to get the feeding tube out and get her comfortable first.
The nurse without compassion came back in and changed the oxygen mask to the cannula, but she did not give any medicine for the air hunger. And she left. Within about a minute, Mom couldn’t breath and was begging me to get the nurse. I told her I would and have the nurse bring the mask back. “Please. Hurry.” she gasped. Those were the last words she spoke to me.
I told the the nurse Mom couldn’t breath, and to hurry and change back to the mask, because she was suffocating, The nurse just looked at me and said she was told to keep Mom and the cunnula. I argued and said that Mom would have to be given the medicine for air hunger. The nurse said she had no idea what that would e, took her time looking through the orders and said that there was nothing in the orders about it. By that time I was angry at the nurse and panicked and yelled at the nurse to just get the damn mask back on my mother so she could breath! and ran back into the room.
Mom was holding the cannula and gasping. Finally the nurse came into the room, hooked up the mask again and left. After Mom could breath I hugged her and told her how sorry I was. She said it was OK, that she knew I loved her and that she wanted to rest. I would tell her what the prognosis after she rested, when the family was in the room. I wanted to ask her if there was any one she wanted us to contact? Was there anything she wanted us to do for her? Did she want to go home to die or stay there? And I wanted to ask her, when I was alone, about things she told me she wold only tell me when she was dying. And I wanted to hug her for a long time, long enough to last a lifetime. I wanted to get her some wine and all of us have a drink with her. I wanted to take her outside, so she could feel the sun on her face one more time, hear the birds, see the sunshine, see the trees and say goodbye to the world. I wanted her to have the chance to tell all of us whatever she wanted us to know.
Shortly after Mom drifted off to sleep, that same nurse came in, did not say a word and gave her a shot in her IV. I later learned it was the morphine that she should have been given for the air hunger. Mom never woke up after that.
Mom slipped into a deep sleep and then eventually into a coma.
That afternoon there was a knock on the hospital door. It opened and there was C, one of my other best friends. I saw her face and almost ran to her, and just hugged her for a long time. We went outside to the waiting area and talked for along time. She was just there for me, she was passing through and decided to stop in. She just wanted me to know I was loved and that she was there for me, for moral support and was praying for me. It meant so much and was beyond needed. I friend and unloaded on her. I didn’t know what I was doing, if I was doing anything right, I didn’t know how to do it. I didn’t know how to loose my Mom. How do I let her go?
My friend left and I felt lighter, though still overwhelmed and deeply sad.
My Dad and sister went home to sleep that night and would return early the next morning. I stayed at the hospital and again watched over Mom as she slept. I cried, and prayed and sobbed, and prayed. I was afraid to sleep in case Mom woke up and needed something. I was afraid to sleep in case she slipped away in the night.
I sat with her, in the quiet of the late night, listening to her breathing. I knew I had to have that conversation with her. And a part of my knew she would not be conscious as I knew her again. In a situation like this, you have to tell them, you have to break your own heart and give them permission to leave. I loved her so much, and she deserved that. And so I did. I held her hand,stroked her hair and her face, and I told her what the doctors had said: That miracles can always happen, but that her little body was jsut getting weaker and did’t have the strength to fight the pneumonia. I told her, as tears streamed down my cheeks and fell onto her , that I knew she was tired and had suffered a lit of pain. If she was tired, if she did’t want to fight any more, that it was OK. She could let go. I told her that I loved her more than anything, and I wanted her around forever, but she could go if she wanted, if it was just too tired. We would be OK. Everything was OK for hr to leave. I told her that it had been my honor to take care of her and my honor still to be there to see her off as God took her in his Great big hands.
I sat quietly with her for a long time after that. I sat and held her hand and watched her breathing. I sat with her and prayed and begged God. I sat with her and treasured every moment we had together. I sat with her quietly and loved her like only a daughter could.
Tuesday July 12, 2017
This day was particularly hard. Mom was in a deep sleep, and she made strange noises. She would grunt when she was breathing, she would mumble and she was just acting so strange to be in a deep sleep. She would moan and raise her hands up as if to hug someone above her, Many times I would lean down and hug her and tell her it was OK.
It was frightening to see this and not know or understand why, or what is happening. What I now know is that those actions are very common among those who are dying They are somewhere between this world and the next. Many nurses and hospital staff say that those who are transitioning see their relatives who come to assist. When Mom was still conscious, she would talk about seeing her sisters and mother who had already passed. She would talk about taking a trip, how she was ready to go home and she knew others were waiting for her.
But no one tells you this while it is happening. No one told us that what was happening and what Mom as doing was the normal, natural process of dying. And it was terrible. It is terrible when you don’t know and your loved one is doing all of these strange things, saying strange things. We were all emotionally and physically exhausted and we were scared. Mom had been such a driving force in all of our lives, how could we loose her?
I lost track of how many times I called my best friend and my boyfriend. I was frantic and crying. I couldn’t cry in front of my father and sister, they were counting on me to be strong and ask questions and make decisions. So those were the two people I could just be me with, be scared and terrified, to not know all the answers, to admit I didn’t know what I was doing. My boyfriend would offer over and over to come down, but I told him no, there was nothing he could do but wait around and be bored. In retrospect I should have let him, to be there for me. I didn’t know it. but I needed the support only a partner can give in times like that.
The ladies from Palliative care came in that morning to asses Mom’s condition. The pneumonia was worsening, and she was getting weaker still. It had been almost a week since she had eaten and she was probably about 65-67 pounds. Her arms were just bone with skin hanging off. Looking at the pictures that were taken during that time, her wrists were the size of a 4 years old’s. Her size extra small shirt was too big and she was swimming in it. The neck was so big for her, and you could see every bone in of her shoulders and collar bone. You could actually see the tendons in some places, she was that malnourished.
The ladies told us that Mom might have another 24 hours to live. If we were lucky she might live a little longer, but that it would either be today or the next. More than anything my heart ached for Dad. They had been married for 49 years. They were the love of each others lives. Mom was his heart. I cannot express the sheer feeling of helplessness I felt to have Mom dying, and nothing I could do; And Dad so, so sad, and nothing I could do to comfort him.
That day, one of the foster children that Mom had came to see her and brought her children. It was so good to see her, but I hated that it was like this. Mom loved her so much and I know she know this wonderful girl was there. She stayed fir quite a while, sitting, holding Mom’s hand. Dad was on one side, and she was on the other. There was so much love in that room for Mom. I know that she felt it.
Mom was not talking or communicating, but she would hold your hand and squeeze it ever so slightly more tight, if you said something to her or if you were about to leave and she didn’t want you to go. So yes, they can hear you even if they cannot respond.
My sister and I found a 3 hour soundtrack of birds chirping and played that so Mom could hear them. She loved being outside and hearing the birds. We hoped this gave her some comfort and pleasure.
Dad would walk over and hold her hand. He would sit by the bed, lean in and rest i his forehead on hers and match his breathing up with hers. He would speak soft words to her and look at her so tenderly. One day I hope I am lucky enough to have someone love me like that.
Mom’s visitor left and then it was just the four of us again. The original Four-Pack that we were , as Mom called us. It was the last time we would all be together.
While Dad and my sister went to dinner ( I think), I stayed and sang to Mom. I noticed that her nails were ragged and in and shape. I knew that would bother her. She would want her nails to look pretty, as she always a lady. There would be a lot of people seeing her, and she would want to look good. And so I did her nails. And I sang to her as I trimmed, filed and painted them. I sand church songs to her – The Servent Song and Surely the Presence. Those were out favorite from a place called Honey Creek It was my honor to do this small thing for her. And to make sure that her hands were pretty for the end. Final, precious moments exchanged between mother and daughter.
I also talked to her about my favorite child hood memories. Like how she would read to me and she never made me sit till. And how she would let me move around while I was reading out t\loud to her too. How she made hot chocolate for me that time I got up after having a nightmare when I was 7. And how many times she had held me whole I cried over a boy who had broken my heart. Long phone conversations, teaching me how to attract butterflies, how to cook and how to be a good person. How she would fix my hair and make some of my favorite clothes. So many, many memories, a lifetime of them. And I told her how much I loved her over and over.
Dad came back and he sat by Mom’s bedside. The we gently moved her over to the fr most part of the hospital bed, and dad crawled in beside her and got as close to her as possible. He wanted to be close to her, wanted to be close to her presence. He would whisper things to her that I could not hear, and did not want to hear. That was private between the two of them. She was the love of his life, and he did not want to live without her. His heartbreak was tangible. He stayed there for as long as he could, crammed up against the bed rails. He gently kissed her before he got out of the bed.
A little later that night, my sister left to go home and bring her boys over the next morning to say goodbye. Shortly after that Dad went to sleep. I slept a little, but I was afraid that Mom might slip away in the night, so I checked to make sure she was still breathing about every 20 minutes.
Mom is resting comfortably and is surrounded by family and so much love that it is amazing. She is still on antibiotics and doctors say that there is always a chance, so please continue to send prayers. The outpouring of love and support has been amazing and is so very comforting during this time. I am beyond blessed to be surrounded by such love and support. Please know that all messages and replies are read and treasured, even if I have not responded yet. Thank you so much for the kind, encouraging words, they not only help me, but the whole family. Thank you to my angels and visitors. My sister is here and we are treasuring each moment we have our wonderful mother. Dad is coping and my heart breaks for him. We know that God is in control and we have tremendous faith in His will. The staff here at SAMC have been wonderful and compassionate as we transition into comfort care in her final days. We could not ask for better staff. Thank you and much love to all.
It was a strange time. And I had gone through all the prayers of bargaining and trying to convince or even bribe God with promises of good behavior. That night I prayed for her to live, unless she was suffering. And then I asked God to lease let her go if she was in pain.
Day 16, Part I
Wednesday July 13, 2017
The day my heart broke.
I didn’t sleep much that might and when I did I had my glasses in my hand. I did this so that I could wake up and make sure that Mom was breathing. I noticed her breathing was much more labored and I knew that it would not be long.
When I got up that morning and immediately went to her to tell her good morning and that I loved her. I took her hand and I immediately knew that something was different. She was still alive, but the only way I know how to explain it is to say that she wasn’t in there any more. She was not responsive as she was before. Her hands were limp, her mouth open, her breathing very labored and from her chest, and her neck was seemingly over extended over the pillow.
Dad wasn’t awake yet and I remember praying so hard that I didn’t want her to go, but please, God please, take her if it means she doesn’t suffer. And to please give me strength, because I didn’t know if I could do this alone as my sister was not back yet.
It was as if my wonderful mother read my mind, because shortly after that one of my dearest cousins called and said she felt compelled, called almost, to be there that morning. I knew that Mom somehow, while in between this work and then next, had put that thought into her head and asked her to come. Mom had always been close to that cousin, her niece. And I knew once again Mom was taking care of me.
A little while later one of the doctors came in and did something so strange, yet said nothing. He took his stethoscope and listened to Mom’s abdomen. He listened intently and frowned. What I found out later that he was listening for sounds from her intestines. A healthy person will have sounds coming from the abdomen. However, when the internal organs shut down and there are no sounds, then death is near.
I started working on Moms nails again as I was waiting for Dad to wake up. And then I combed her hair. It was all matted and tangled from he laying on it and not being washed over the last few days. I was terrified of pulling her hair and hurting her, even though on some level I knew that she was in a coma by now. Most people who pass naturally actually go into a coma before death. For that I was glad because she had suffered so much over the last 16 days, and several years.
I sang to her as I combed her hair:
Surely the Presence of the Lord in in this place
I can feel in His mighty power and His grace
I can feel eh brush of angels wings,
I see glory on each face
Surely presence of the Lord is in this place
And I arranged her hair as best as I could. It was thin and frizzy from the malnutrition. I gently brushed hair out of her face and arranged her blouse. I knew that she would want to look as nice as possible, Mom was always a lady and a lady always looks nice.
When Dad woke up her immediately went to Mom’s side. I went to call my best friend and my boyfriend for support and encouragement. I didn’t know how to do this. I needed to hear their voices to help me. And I cried and I prayed. How do I let my mother go?
The ladies from Palliative Care came in to once again check and see how Mom was, how we were and if there was anything that we could do. The explained to me that the way she was breathing, from her chest muscles, that it would seem she might have a few hours, and that was it. They changed her oxygen mask to make her more comfortable, and asked a few questions.
I started frantically calling, texting and emailing my sister to please, please get there with the boys. Mom would want them there and they would want to say goodbye. I could not understand where they were.
And where was my sister? How could I do this? How could I help and guide Dad through it, while loosing my Mom at the same time? It was all so surreal. My head was swimming.
I cannot describe the emotions felt s=during this time. It was a sadness and reality I had not known before. It was fear and love and heartbreak and shock and…so many indescribable things. You move through those moments as if on auto pilot, as if you are not really you. It’s almost like an out of body experience because when I look back I see it from almost a third person perspective.
Soon my cousin arrived and I knew Mom knew she was there. My cousin was a retired nurse and no doubt had seen death before. I will never forget how gently and gingerly she took Mom;s frail hand and put her head down. Mom’s breathing was more and more shallow. We all gathered around the bed.
I was on one side holding Mom’s had and stroking her hair. Dad and my cousin were on the other side. Dad was holding Mom’s hand and had the most lost expression in his face. My cousin was gently and softly talking to Dad, while keeping an eye on Mom’s breathing. I twas like an unspoken plan – she would talk to Dad and be a distraction, while I took care of Mom in that moment. And so it went.
And as it got close, I could almost feel the moment. It was as if the heat from her hand receded in an instant. It wasn’t cold all of the sudden, but there was no more life being generated from that moment. It was a shift so slight and subtle I almost doubted it happened. You are never prepared to see your loved one take their last breath. Her breathing was more and more shallow, the time between breaths kept growing. I held her hand and stroked her hair and watched as her chest barely rose, then did not rise again. And she was gone. It was quiet, it was peaceful, it was the most beautiful and painful moment of my life.
Mu cousin knew and their conversation came to a lull. I looked at Dad, as he was still holding her hand, and said softly: “Dad. It’s time.”
He looked at her leaned over and said “She’s not breathing.”
It was 12:15.
And he fell apart. His wife, his best friend, his partner, his lover, his everything, was gone. He began to scream her name and cry. He called out her name over and over, more pleading in his voice each time. It is the pleading that comes up from the depths of your soul, where pain originates. He gently held her face, stroked her cheeks, his tears falling on her brow and gently down her cheeks too. It broke my heart. That was truly the hardest moment, to see my strong father in those moments after loosing what he loved most dear.
He cried and called out her name, begging for her to come back for maybe 30 minutes and then finally was able to speak to us. He asked me to make the phone calls and take care of all of the arrangements, he just couldn’t do it.
I took the cannula from her face and nose. I brushed her hair once more. I arranged the covers for her and tried to make it so it was easier for others to see her.
I cannot describe what those moments were like. I was lost. I could not imagine a life without her. She was my Mom. How could she be gone?
At 12:15 today, my beautiful mother passed away peacefully. She was surrounded by family and an immeasurable amount of love. We held her hands as she slipped from,this world into the hands of God. While it was the most painful experience of my life, it was also the most beautiful. It was truly my honor to be there with her. I have been so blessed to have her as my mother, and for this many years. Please continue to pray for our family as we go through this difficult time of figuring out life without this amazing soul. Please especially pray for my father who lost his dearly beloved of 49 years. She is a beautiful soul, was a wonderful wife, and amazing mother. I will miss her every day of my life.
Day 16 Part II
Wednesday July 13, 2016
Dad had collected himself and it was time to let the nurses know. I walked out and told them and asked for their help. I didn’t know what to do. I didn’t know how or what was next, so please help me and guide me. I told them that by Dad’s request I was to handle everything. That the only thing he was to be involved with was any legal docs that he had to sign, and other than that everything would go through me.
I was numb, I was in shock and there was so much to do. I had no idea what to do. It is hard to remember everything, it was such a confusing day. I know I told the staff, I know they put a sign on the door to see the nurse before going in the room. I signed several papers and then they gave me a list of funeral homes. They had to be called to pick Mom up.
I had to call the funeral homes. How do I pick a funeral home? What do you even ask them? How do you know you are choosing right one? I just looked at that list and started shaking and my head was spinning. I had to pull myself together, there was too much to do to fall apart. Mom taught me better than that. I took a deep breath and called the first place.
Nope, not the one. I had a bad feeling about them. Called the second and they were very nice, friendly, compassionate. They understood I had no idea what I was doing and would take care of everything.
I know I made many phone calls to family, friends. I must have called my boyfriend a dozen times. I know that I cried. But I really don’t remember much of it.
I do remember that the nurses went in the clean Mom up, but they did not do a good job. It was 3 or 4 hours later and my sister had not shown up yet with my nephews. My cousin had taken Dad to be with him and support him. I walked into room with Mom and noticed that her face had not been cleaned up. I got a damp cloth and gently, lovingly washed her face and made sure she looked nice if the rest of the family wanted to see her. I arranged her and made sure she was OK to for them to see. I am a strong woman, but that was one of the hardest things I had to do.
When my sister arrived with her boys I told them the news. I wasn’t sure how to say it and I think I did it wrong. I met them in the parking lot and told them before they went up. I should have told them in one of the other rooms in the hospital. But I wasn’t thinking. They did not want to see her, but my sister wanted her stuff out of the room. They wanted to to take Dad to the family home while I took care of the arrangements.So I went in and out of Mom’s room, arms full for several trips, as I got everything of theirs out of the room. It was so odd. I knew that Mom was technically no longer there, I couldn’t just walk into the room and not say anything.
Soon after everyone left and I would meet them later. The men from the funeral home had arrived and I had signed the papers needed. I walked into Mom’s room to say a final goodbye. I sat by her bedside one last time, took her hand and told her that I loved her. I told her that I would miss her for the rest of my life and that she was the best mother I could have been blessed to have. And I thanked her for everything. And said one last time I love you, Mom.”
I turned to leave and the lights on the hospital room flickered 3 times, as if she was saying “I love…you.” And I knew it was her. I burst into tears because I knew. And I told her that I wanted her to “haunt” me a lot, she had to know, I needed to know that she was still close, because I wasn’t ready to let her go yet. I wasn’t ready to have a life without my Mom.
And all this year, she has given me signs that she is here close to me. And though this past year has been the worst and hardest of my life, but I know she has been there for me. I have made mistakes, but I have done the best that I could. And I know that she loved me enough to last a lifetime.
A Walk with Mom: Conclusion
No one is every prepared to loose their parents, even though it is the natural process of life. We will all loose our parents, we will all feel that grief, we will all share in that story. And even though it is something that we will all go through, the story and relationships and grief are all different. This has been mine.
Thank you for going through this journey with me, throughout this year and in this series. I had not been able to sit down and write about what happened until now. With taking care of Dad full time, working full time, trying to handle a relationship, and then the break up of the relationship and Dad’s death…it’s been a busy year where I felt like I had lost everything.
But the fact is that I haven’t. The fact is that my parents loved me enough for a lifetime. My parents loved me enough to teach me and give me to tolls needed to love a wonderful life, even if it is without them. And that is their gift to me.
And it is in writing this that I am able to let go. It has been a hard year, but it is time to let go of the sadness, the loneliness, the grief. It is still a process, but with this series, with this anniversary, I move forward, like they would want, like I want. I have wonderful friends who are my heart and soul and family. I have blood family who loves me and will always be there. And so it is with this, and with the love of my parents that I LIVE.
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