Tuesday, September 11, 2012

What Do I Do Now?

One of my friends suggested that I write down all my thoughts and feelings down to try to deal with my grief.  She said that I should probably do it privately ... but that has never been my style.  I'm an open book kind of girl.  At my own funeral, or if somebody makes a movie adaption of my life, I want "Iris" by the Goo-Goo Dolls to be playing.  The line, "I want you to know who I am, I just want you to know who I am" echoes my own philosophy towards life.

Well, anyway, here goes nothing!

According to my mom, on Friday, July 13th, things kept going wrong for her.  I can`t remember the entire list, but one thing was that she had a small accident in the garage of the building in which she lived.  There was minimal damage, just a scrape to her car, but Mom still felt awful.  Far more worse, however, was the fact that Mom started having chest pains, her heart beat wildly within her bosom.

From then on, my poor mother was in and out of hospitals.  First, she was in Centenary Hospital, where they gave her a pacemaker and kept her in for observation for about 10 days. Mom got sent home without any sort of home care, which upset me so much because she was weak as a kitten after the ordeal in the hospital. Plus, she was told not to use both arms until the stitches from the pacemaker healed.

It was a very short time after that when Mom called 911, complaining of the exact same symptoms as before. This time they took her to Scarborough General.  There, they gave her more tests and tried her on different medication. It was also where somebody stole Mom`s wallet while she was in the washroom.  Yuula and I comforted her and used our cell phones to call to cancel bank/credit cards.

I guess it was late July/early August when the hospital sent Mom home again, but this time they gave her home care for her morning showers.  And, my niece Michelle, very kindly offered to stay with her.  Only 14 at the time, I greatly admire my niece for taking on this responsibility.

Sadly, late at night, on August 8th, Mom went back into the hospital. This time it was Centenary again. She never returned home.

It was an emotional roller-coaster for my family and me during this time when Mom was in and out of hospitals.  We were scared and then hopeful, worried and doubtful, and then cautiously optimistic. It was a never-ending cycle of hope and dread.

There are things that stick in my mind, both good and bad, and I'm sure they will stay there for the remainder of my life ....

So many times I went to see Mom in the hospitals, or at her home during her all too brief stays there.  Either by Wheel Trans (frustrating as hell!), wheelchair accessible taxi (bloody expensive!), or accessible TTC routes (I found that this was the easiest and most preferable mode of transportation), I made damned sure I visited as often as I could. Guilt-ridden, even after almost three years, for not being with Rob in his final few minutes, I was determined not to let Mom have a similar fate. Well, also, because Mom had stayed with me as a kid whenever I was in the hospital (which was often!) with stomach troubles, and then, later on, when I was 18 and had major surgery and had the Cerebellum Stimulator implanted inside of me.  Mom had always been there for me, and I wanted, now, to be there for her.

I remember the first time the hospital called me to come right away, my mother wasn't doing very well.  It  was around midnight and I was just thinking about starting to head to bed.  Instead, I called a cab and went to the hospital with my friend/employee Simone.

I asked my mother's nurse exactly what was wrong, and she used the term "congestive heart failure", and I tried my best to grasp what she was telling me. (Frankly, I understood the full implications more when I Googled this medical term.)  Basically, it means that the heart gets weaker and weaker, and then the person's lungs fill up with fluid.  Pneumonia/bronchitis sets in, and the patient's heart gets weaker still.

Funny enough, it wasn't very long after I arrived that Mom's condition seemed to improve.  Perhaps it was the morphine, which the nurse said helped Mom  to breathe better, or perhaps it was my presence, sitting beside her bedside and holding her hand.  In her more lucid moments, Mom mumbled something about how she thought only lovers held hands like this.  (In a less lucid moment, she asked Simone if she'd like to order fish and chips.)  And, when her condition improved even more, she began to sing "It's a Big Wide Wonderful World", which was one of her favourite songs.  She seemed amazed that I had spent the whole night with her, and urged me to go home and get some rest. Was it any wonder that at times like these I doubted the gloomy diagnosis my mother was given?  Didn't the doctors and nurses know that Mom was Super Woman?

Although I still worried about my mother's condition the two times the hospital sent her home, I had this same feeling of optimism.  The first time my mother went home, Sarah and I brought over homemade spaghetti and Caesar salad, which Mom thought was delicious and ate more than she had in weeks.  Bruce was there, too, and was also very appreciative of the meal.  Mom was in good spirits, and showed us pictures from her wedding album.  The second time Mom went back home, Bruce was there again, this time with the kids, and Aunt Joyce popped in later on in the evening. We watched Singing in the Rain on TV, much to the kids amusement, and ordered in pizza. Once again, we marveled at Mom's ability to eat a whole slice of pizza.

With Rob it was the dates of September 17th, 18th, and 19th that have been carved deeply upon my heart and brain. With Mom, it's August 19th, 20th, and 21st..

On Sunday, August 19th, Yuula and I visited Mom in Centenary Hospital.  Motria was there, too.  We all remarked how well Mom looked: her eyes were bright and clear, her complexion absolutely rosy.  It was true that she had both pneumonia and bronchitis now and the antibiotics she was on were playing havoc with her digestive system, but I hadn't seen Mom look so good since this whole mess had started.  Because Mom was very weak from all her health problems, I asked Yuula to assist her with her dinner.  Mom took two mouthfuls of spaghetti, which looked both daunting and unappealing in its hugeness, and told Yuula that that was enough. Yuula helped Mom eat two bites of mashed potatoes and two sips of tea. That was all Mom could handle to eat.

Mom's lack of appetite, physical weakness, and the shallowness of her breathing worried me, scared me.  I had seen Mom breathing like this many times during those six terrible weeks, usually the day before she made one of her 911 calls, or right after being admitted into the hospital.  To ease my apprehension, Yuula told  me that she'd had pneumonia and bronchitis when she was a teenager, and she had been as weak as a kitten too.  Plus,Yuula reminded me, Mom wasn't in CCU anymore, she was on a regular floor, number 9 to be exact - that had to be a good sign!

On Monday, August 20th, around 11:00 am, I got a call from the hospital.  They told me that Mom wasn't doing very well and that I should come as quickly as possible. I called a cab and went right away with Ainsley by my side.

When we arrived at the hospital, Mom was still on the 9th floor.  The nurse told me that Mom had had a bad night. Her heart had been beating wildly in her chest again, and they tried to slow it down with medication.  What needed to be done now, I was told, was to take her back down to the CCU so they could monitor her condition better.  I felt hopeful about this. Maybe they could make Mom better again like the other time she'd been there, and then she'd wake up and tell me to go home and go to bed.

It took a long time for Mom to get moved.  Someone had to be moved out before she could get moved in.  I sat and waited with her during this time.  We chatted, Mom seemed amazingly cheerful. Her voice seemed to be slurred and it was difficult to understand, but I'm pretty sure I understood two things she said:  1) "How are you?" and "I'm not worried."  Those were the last words I heard my mother speak.

When they finally did  take my mom down to the CCU, I decided not to follow along, knowing I'd just be getting in their way.  Instead, I decided to go and eat something to keep my strength up.

I always regretted the decision to leave my mother to go and eat, because when I went down to the CCU, I was shocked, not by all the flashing lights on the monitor or by the bruising upon my poor mother's arms - these things I had seen too many times before! - but by her general overall condition.  She was unconscious, and no matter how loud the nurse and doctor called her name, Mom would not/could not fully regain consciousness.  She would periodically attempt to pull off her oxygen mask or suddenly jerk both of her arms into the air, but she never uttered a word or gave any tangible sign that she knew where she was or what was happening to her ... at least not until the very end when, suddenly, she reached out and grasped my hand.

The doctor came in to tell me that Mom's condition was worsening and that she probably wouldn't survive the night. I was told to call my family and tell them to come as soon as possible. I did, and waited for my brother, cousin, and aunt to arrive.

In the interim, a nurse came in and asked, somewhat sheepishly, if I had Power of Attorney over my mother's affairs. I said, no, I thought my brother Bruce did, though.   And then the nurse explained that they had made a mistake and shouldn't have actually brought up my mother back to the CCU because upon her arrival they had automatically given her heart medication, which was apparently against my mother's wishes, according to a document she had signed.  (No resuscitation, and no heart medication if the prognosis wasn't good.)

And then, I was given a terrible choice: go against my mother's wishes and continue to give her the medication, which would at least make her feel more comfortable, or stop the IV at once.  The nurse explained that Mom was probably feeling like she was drowning or suffocating, and the heart medication would make her feel better.  What could I do?  I couldn't sit by knowing my mother was suffering, could I? Knowing, also, that not continuing with the IV could most likely end her life.  I still had  a tiny bud of hope inside of me that Mom would pull through and recover completely. After all, Mom had bounced back before, hadn't she?  It was only yesterday when Mom seemed mostly recovered.  And, I kept thinking of when Rob had had Pancreatitis and the doctors only gave him a 15% chance of survival.   The doctors had been wrong then; they could be wrong about Mom now. Even now I'm not sure I did the right thing by giving mom the heart medication but what could I do? If the roles were reversed I'm sure Mom would have done the same thing. 

For what seemed like hours Ainsley and I tried to coax mom to keep on fighting. And then I felt guilty because maybe it was too much for her. So I said, if you need to leave I understand and I love you. To make her time there easier I asked Ainsley to play Mom her favourite songs:  "I Can't Get Started With You" by Bunny Berigan, "What a Wonderful World" by Louis Armstrong and "Ain't Misbehavin'" by Fats Wallar. Each time a song would play mom would raise up her arms. I'm not sure if it was in glee or in frustration. Perhaps mom wanted to get up and dance around. I could see her do that!

Around 6:00 pm, my brother Bruce, Aunt Joyce, cousin Lesley, and her 24 year old son came to the hospital and sat around Mom's bed. They all spoke to her in sad and loving voices.  Bruce spoke so gently and took the oxygen mask from her grasping hands.  "No, Mom," he'd say, "the mask is helping you breathe." His voice was so tender it was as if he was speaking to one of his children.

Much to my amazement, one by one my family left. At first I was upset by this.  However, then I thought, well, my aunt has Brittle Diabetes and isn't well and I knew that Lesley was probably driving her home.  And, Brandon, Lesley's son, was young (only 24), and may not have understood the implications of leaving me alone. And Bruce, I love him. And I know he doesn't say much but I know this whole episode with Mom has been hard on him too. Maybe he had the same hopes I did that Mom would recover and that he would see her the following day.

And so, I was alone.  Well, not exactly completely alone.  Mom was there, and my employees/friends took turns coming to the hospital to offer assistance and support.

On August 21st, after hour upon hour of sitting beside my Mom and watching her erratic breathing and watching the monitors dance crazily my mom suddenly flung her arm and reached out with her hand to hold mine. Her grasp was very weak but I held her cold hand firmly. I held my breath and looked up at the monitors and the nurse who was in the room said "Don't look at the monitors, that's not your Mom."  So I looked at my Mom and she breathed once, twice and thrice and then no more. I looked at the nurse and she nodded and I understood.

I didn't cry.  I asked Simone, "Why aren't I crying?"  And then I asked, "What do I do now?"  Almost immediately I heard Fleetwood Mac in my head singing "You Can Go Your Own Way" and that's when I cried. Actually, I bawled long and heard because I knew that Mom was saying to me that she's fine and that she has confidence in me to go my own way and live my life the way I want to. I just didn't want to go my own way without my Mom. We had always been so close.

It was a hard, long journey, but I'm glad I stayed with Mom to the very end. I know in my heart she would have done exactly the same for me.

I love you, Mom.