Did I tell you that I suffer from Depression and General Anxiety Disorder? When my medication doesn’t work, I can have up to 6 panic attacks a day. I have this feeling of everything spiraling out of control. I’m terrified on a daily basis of someone I love dying and my own death. I count down years I have left, how many years my loved ones have left – and these thoughts have terrified me most of my life.
My family has had to suffer through my bouts of depression. Now we were all facing this fear and I was some how the one who had to take the lead. I was appointed the official contact for the doctors and the hospital. My father and sister was looking to me to make the decisions of when we would visit my mother and sit with her while she was in her coma. Initially we were all going to take turns, but some nurses would say we shouldn’t be there because we might bring in infection and some nurses would say it would do her good. So on a daily basis, I decided if it was a good idea or not after talking to the doctors.
She had been in a coma for 3 days and the doctors weren’t able to tell us if she would come out of it. They diagnosed her with Emphysemia and COPD. We were told that she had probably caught the pneumonia from the operation, and because her lungs were already compromised, she wasn’t able to fight off the illness. They had been waiting for her oxygen levels to get stronger. She was on a heavy doses of pain killers and antibiotics.
I had to make sure my family got rest as well. We couldn’t get too exhausted because we needed to be able to be there for her 24/7 when she woke up. We started writing love notes to her daily and bringing them in and keeping them in a box at the foot of her bed. We would sit there and hold her hand in the darkness of her room, watching the monitors to see if her numbers were improving.
My father had stopped eating or bathing. He sat at the computer mindlessly playing games and chain smoking. I had to remind him to eat. My sister had turned to our doctor to get a prescription for medication to calm her nerves. She was constantly researching worst case scenarios online. I had turned to social media to distract myself. I had a group of friends on Twitter who were supporting me and helping me keep my sanity for my family. It was somehow easier to talk to people outside of my world. When I talked to people close to me, I wanted to break down, and I couldn’t afford to do that right now.
At the same time this was going on, I received the phone call for my surgery for weight loss. I had been waiting over a year for the call and the day my mother had her surgery, I had to meet my surgeon for the first time too. I had planned to cancel the meeting but my mother had insisted I go. Now, they wanted to book my pre-admit in 3 weeks. It was a ridiculous notion to consider going through with the surgery at a time like this, but my father didn’t want me cancelling. I told them I couldn’t decide on the surgery right now. They gave me a week to make my decision.
On October 3rd, my mother’s birthday, the doctors decided my mother had improved enough to take her off the main life support and try to wake her up. There was a major issue though. When my mother came out, she had ICU Delirium/Psychosis
What is ICU psychosis?
ICU psychosis is a disorder in which patients in an intensive care unit (ICU) or a similar setting experience a cluster of serious psychiatric symptoms. Another term that may be used interchangeably for ICU psychosis is ICU syndrome. ICU psychosis is also a form of delirium, or acute brain failure. Source: Medicinenet.com
She was essentially in a waking nightmare.
Still we were so happy to see her awake. At first we couldn’t understand much of what she was saying – she was slurring her words. She was extremely confused and angry and essentially had a child-like mentality. My sister stepped up. She was able to reach through to my mother and keep her calm the way my father and I couldn’t. Every time my mother saw my father and I, she became agitated. She would want to go home and start trying to pull her tubes out. When we tried to keep her still, she would become more upset and start to swing out. At one point, she tried to bite a nurse.
That night, after we had gone home, we got a call that she had to be put back into a coma. Her oxygen levels had dropped, her heart rate flat lined and we almost lost her.
The second attempt to bring her out of her coma was a couple of days later. This time they kept her heavily sedated and restrained her. We went into see her but we had to keep our visits short because we seemed to upset her. Her delirium was still there and she was still insistent on going home.
It was only a couple of days of Delirium but it felt like forever. It was so hard to see her like that. She was terrified and we couldn’t seem to reach her. She begged us to cut the restraints and was so mad that we were leaving her there. My sister had instructed us to stay positive with her; always say yes; and if she asked to leave we were to just tell her “soon, we are just waiting on the doctor.”
At the same time this was going on, our family wanted to visit her, but we knew my mother would be upset if she found out they had seen her like that. My aunt came in at one point, but she left in tears after my mother became irrationally angry at her. She only wanted us and no one else. My aunt couldn’t handle not being able to help her.
The fog wasn’t lifting and the doctors agreed to let us bring in our dog. We hoped that he would snap her out of it and bring her back to a more pleasant state of mind. At the time, she didn’t seem really that interested in him. She pet him and made a kissy face at him, but then she turned back to begging us to take her home.
That night, my father came back from the hospital. He had gone there with my sister. I had a migraine from the stress and couldn’t go. When he got home, he told me that I would need to talk to my mother. She was asking to go home and they had told her in the morning to soothe her agitation, but they though I would be better at explaining what was going on to her.
The next morning, I heard him on the phone talking to my mother. A doctor had allowed her to call us. She wanted to come home and she had gotten verbally aggressive towards the hospital staff. My dad was floundering on the phone. He put her on speaker phone so I could talk to her. When I told her she couldn’t come home yet, I heard the panic in her voice. “Are you joking?” she asked me hysterically. “This isn’t funny.”
I told her we’d be right there to talk to her.
My father and sister took a seat and I held her hand. I explained to her as kindly as possible what had happened to her. She wouldn’t look at me, because she said I had been mean to her. As she cried, we tried to remind her how much we loved her, that we were right here for her and that she needed to be in the hospital for her health.
After that, her stubbornness kicked in. She was told she had to do certain things before she was released – such as walk on her own. Her progress was quick. For the most part she had a clear head, but occasionally the delirium would come back. Her past traumas came back to haunt her. On the 3rd day, my father decided that being in the hospital was worse for her mental health than being at home, and against the doctors advice he had her discharged.
Now it was up to us.
They had my mother on Prednasone. It made her nauseous and increased her anger, which she was taking out on us. She wasn’t happy that we were forcing her to take her medication, eat, and drink. She was mad that she didn’t have energy and she felt like we were treating her like she was crazy.
It was a long emotional couple of weeks, but mom was on her way to recovery. I had decided to go for my surgery. I would have to do it alone. I would be travelling to Toronto and staying with a friend. Things were going to be tough but they were looking up.
The day before I was to leave, my mother went in for blood tests and they sent us to the Emergency Room. Her remaining kidney was failing. Her potassium levels were so high that they were worried it was going to stop her heart. They discovered that a stint her surgeon had put in had shifted and blocked her ureter. The kidney was swelling and something had to be done that night, but both urologists in our city were sick and couldn’t help. My mother and father were flown to London, Ontario that night and once again, our world was in danger of falling a part.
I was left at home, and would drive there 2 days later to be with them. At that point, they had saved my mother but they had her in the hospital trying to bring down her potassium levels.
I was trying to just focus on the next task. My surgery date was coming up and I was constantly trying to reorganize my plans so I could get everything done that needed to be done. On top of everything, my friend who was suppose to help me had slipped and broken her ankle.
Still, my mother was alive and it made all the rest of the stress just seem small in comparison.
Somehow, I managed to get to my surgery, and my parents were both able to be there for me since they were already in Southern Ontario. Staying at a hotel allowed both my mother and I to recover a bit before taking the long journey home. My father was there for both of us.
We spent about 10 days before heading home to recover further. My mother had gotten her energy back and she looked better than ever. She would need to undergo another procedure to have a 2nd stint removed. Her doctor told us that she would need chemo to make sure they had got everything. This meant that she would lose her hair. Despite that, she was holding it together.
When she had the 2nd stint removed, they noticed something on her bladder. After a few tests we were informed today, that my mother has bladder cancer. The cancer is rare and aggressive and the prognosis is poor.
The doctor is trying to rush a surgery as fast as possible but because its the holidays, we don’t know when it will get done. With this cancer, the faster its taken care of the better. It moves quick. The only thing I can hope is that they caught it soon enough. My mother and father don’t know the grim fortune that my sister and I learned from the internet. Stressing her out isn’t going to help.
So we are back where we started when we first found out my mother’s diagnosis last year. We are scared, feeling helpless and facing the very real possibility that we won’t just lose our mom, but our best friend.
Cancer should have been cured by now.