This blog covers the next 18 days after the momentous day in Part 1. It was a time of great distress, uncertainty, and many ups and downs. To me it was a living nightmare. All Mom’s routines had changed which made my life and hers very unpredictable. Nothing was the same as it had been and it was as if we were in a swirling void of chaos and sadness. Mom was definitely declining severely during this time and I was constantly reeling from the thoughts that any day might be her last.
After the oxygen and pump were hooked up Mom basically lived in her chair in her bedroom. She slept more and more of the day, her head buried in her pillows. I spent most of my time lying on the bed in her room drinking endless cups of decaffienated tea and watching her intently as she slept or talking with her if she was awake. She wanted to know if everything was in place for her funeral and was frantic that I look into her insurance to make sure I knew what to do. We talked about funeral plans and how she felt about leaving this world. She would tell me she felt alone, very alone and she could not feel God’s presence. I took my black letters I used for decorating in my church library and taped the verse ” I will never leave you nor forsake you” on her cupboard door where she could always see it. Secretly, I read it over and over too, as I felt very alone in these bleak days.
There were some bright spots in the sadness. Late in the afternoon, Mom was usually awake and restless. I began telling her family stories. I would start off with, ” Once upon a time there was a family….” I retold often funny family stories I had experienced since my youth. Like the time Mom left the lemon out of the lemon pie, or the time my young brother left the lid off his jar of tent catepillars when we left for the weekend. They were everywhere when we got back even down the sleeves of clothes hanging in the closets. I told her about the time we were in the CN tower having lunch in the revolving restaurant and Mom put her purse down on the window ledge and it waved goodbye as we kept revolving around. Ian and I frantically started running around the restaurant trying to get back her purse. It had a happy ending but was just one of those family stories that gets told at family gatherings. Part of our heritage as a family. That was a day I will never forget. Mom and I had a very special time together remembering stories.
On the medical side of things, Mom began not eating at all except an occasional glucerna, a meal replacement drink. She became weaker and weaker and could no longer get down the hall to go to the bathroom. I brought in the new commode from the garage I had bought and saved for such a time as this. Sitting right next to her chair it was still an effort for Mom to shuffle two steps over to use the commode. I became everything to her, daughter, PSW, nurse, caregiver, etc etc. I never thought I would end up toileting my Mom but she would not allow anyone to do it. That meant I was home 24/7 basically. I could not leave her in case she had to use the bathroom. There were also times when she continued to be very confused. She became frantic even if I just went downstairs because she would forget where I was and panic. I took to writing on a white board where I was in the house and when I would be back so she would stay calm. It meant that many nights I did not have supper because I just could not leave her that long to get something ready. Tea became my staple food – not the best solution for an already exhausted, worn out caregiver.
Then came the period of days when for some reason she had severe diarrhea. It would run down her legs onto the carpet, her blankets, her clothing. I spent one night doing laundry all night. Mom was so embarassed and I was so tired. We were two tortured souls bound together by sickness and decline. Nights were spent watching her intently in the dark as she still struggled with her breathing. Whether it was sleep apnea or more mini strokes, she would often stop breathing for 20 seconds or more. This terrified me to no end. I would wait anxiously to see if she would start breathing again, worried each time that this was her last breath. Often I did not fall asleep till somewhere around 2 in the morning.
Nurses were coming every day to see her and check her pump. Our mandate was to keep Mom as comfortable as possible. That was it. Was this the end?? I spent each day suspended in time wondering when that dreaded moment would come and it would be all over. Funny thing though, not many tears were shed during these days. I think I was in my robotic caregiver state. I had to keep going no matter what. There was no time to mourn or lament. There was laundry to do, medicine to administer and I was bound to Mom as if she were an extension of me.
It was a quiet time with just the two of us mostly when the nurses or PSWs weren’t there. I was not able to work or go out, All life beyond our immediate situation was suspended. I spent a lot of time crying out to God. I did not understand why he did not take her to relieve her suffering but I knew he was with us through it all and that he was sovereign and loving. Although I questioned God I did not expect an answer. I just trusted he had it all looked after. I just had to keep doing my part in this saga. The 2 cats were also upset. They would often howl and Oreo would go into hiding. Other times they would keep watch over Mom like brave little watchmen. Gus Gus would often curl up on the bed with me as I lay drinking my tea and watching Mom sleep.
Sometimes Mom would want to watch one of her shows but she could no longer get into her sitting room where her TV was. I would bring up the laptop and with an extra speaker she could watch a show once in a while. But soon this became too much for her.
Gradually, Mom got weaker and weaker. Her legs would sometimes buckle as I got her to shuffle the two steps over to the commode. My back took a beating but I did not know of any other solutions. My friends and doctor were adamant this could not go on. I would not survive the emotional and physical toll it was taking on me. I refused to accept other solutions especially going to the hospital. It was out of the question. I would continue to care for her as I had been doing. Mom and I were in this together for the long haul. However long it took. I would not desert her. My friends and doctor looked on with concern and worry. Finally the palliative care nurse ordered her to be bedridden and a catheter put in. I fussed about this but realized that it was the only option we had if she continued to be at home. It was planned for the next day. What happened that next day would change the course of our journey drastically. Things would never be the same again. Read about that day in my next blog coming soon.