12/12/11.That's the date that Jimmy began chemo and my mom went into Hospice. Two significant events intertwined in my mind. Forever.
My mom wasn't dying......not actively. Although she is 93 and has numerous co-morbidities she's always managed to rally. As she used to say (when she lived with us, and back when she was of a sound mind), "I'm a tough old bird". After living with us for 8 years, I struggled for a year-and-a-half with the decision, and ultimately placed her in an Assisted Living Facility (ALF) just 9 months ago.
Apparently she developed a stage-2 ulcer on her buttocks and according to ALF regulations, unless she was in hospice we would be given a 45-day termination notice! The thought of moving her yet again just seemed too inhumane.
So it was an emotionally charged day all the way around. The Hospice thing came out of the blue. I hadn't been informed about the regs, or the ulcer, prior to receiving the phone call the night before from the director of nursing. All the years she lived with us, my mom never had a problem with skin break down. It was upsetting. The guilt ate away at me. "Maybe I should have just kept her at home with me; then this wouldn't have happened." Great daughter that I was! I know, I know..... guilt is a useless emotion and a self-inflicted punishment. Having said that, I do well enough on my own with this useless emotion but at this same time it was also being successfully exacerbated by a toxic sibling.
But long story short, I just couldn't do it any more. I was drained, even with a sitter during the weekdays it was becoming stressful and arduous. I dreaded the time in between sitter: the mornings/evenings and the weekends. At night it took me at least 45 minutes to get my mom ready for bed. My patience was wearing thin. It wasn't fair to her, to my family, nor to me. She couldn't help it but neither could I contain my impatience and frustration much longer, so my only recourse was to place her.
The facility was actually lovely, and only an 8-mile drive north of my home. Straight down the ocean road. I visited my mom 3-4 times a week but I hadn't been by to see her much lately what with Jimmy's diagnosis, traveling to Houston, and then all the doctors appointments in between. I felt guilty and torn.
Anyways, the damage was done. She was at the ALF and the ulcer just highlighted the physical and mental deterioration that was progressing. I wanted to visit my mom but I had already planned on accompanying Jimmy during chemo. I was his partner in this and didn't want him to be alone. He was very apprehensive. My mom had the attention of the Hospice nurse plus she had her sitter with her during the day so she was well-attended, but still.....the guilt!
So I accompanied Jimmy to the chemo infusion center which was situated inside the oncologists' office. Clean but cheerless and dreary. What is it with these doctors' offices? It doesn't take much to pick out a happy paint color, update the furniture and paintings, and make something bleak a bit more palatable! Environment has a huge impact on the psyche.
Jimmy had his labs drawn, we met with the doctor and then we went back to the infusion room and got situated. It seemed like forever before Beth, the nurse, even came over to us. I could see Jimmy getting tense and impatient. Waiting isn't his strong suit. Me? I'm impatient but I'm actually highly skilled in waiting. All I do is wait....between my elderly mom and my son, I'm always waiting in some Drs office.
Beth was busy running back and forth and attending to patients in various stages of their treatment. The nurse in me couldn't help but marvel at what seemed like organized chaos, yet somehow in the end, it all managed to "work." It also surprised me that the chemo was not on a pump, the drip rate was just "eyeballed" and there it went! In spite of the mayhem, Beth was friendly, and engaging. Quick to acknowledge and give a cheery greeting to every patient. This was a major reason in our decision to stay at this god-awful place. Sometimes the staff makes all the difference.
Jimmy was nervous, he hates needles; even the thought of it. When our son was an infant if Jimmy came with us to any appointments, he always had to look away when he got his shots. When we took our cat to the vets Jimmy would have to leave the room.
Finally, Beth came over to Jimmy and skillfully accessed his Power port while maintaining a steady repartee with him. I could see he was pleasantly surprised. No discomfort, just a quick prick and the site was accessed. The port made it simple and pain-free. There were about 6 bags hanging. A bag for nausea, a bag with steroids, and a bag to prevent reactions. These were all given before the actual chemo meds. Today he would get 2 different chemo drugs, the 2nd day just one chemo drug.
There were individual chairs situated in between the recliners. Chairs for family and friends. I remained at my husband's side the entire time. I felt it was the least I could do, offer my emotional support. It was actually a good group that 1st day. Everyone was talkative and friendly. So many serious cancers: breast, colon, pancreas. In spite of the situation the mood was upbeat and hopeful. Beth ran around checking on drips, speeding some up, slowing some down. Taking turns joking around with all the patients. Trying to make everyone happy
Jimmy seemed to tolerate his meds with no distress. Some of the time he worked on his computer, read documents, made phone calls, spoke to other patients and occasionally napped .....and then became really grouchy when I nudged him out of a deep snore. Finally the day was done. We had been there from 8 :30 til 6pm. A very long day indeed!
The 2nd day was a bit shorter. Jimmy got all the preliminary meds and then just one chemo drug. We left around 2, enjoyed a late lunch, and then went home.
I was surprised at my husband's resilience and energy level. I pushed fluids on him, made sure he drank a sufficient amount of water. He brought work home and was busy reading cases and going on the computer. I made him promise me that he'd take a nap. So I decided to run out and see if I could get my bangs trimmed. I was starting to feel like a shaggy dog that was long overdue for grooming.
I ran by the salon. My hairdresser was busy but nice enough to wedge me in between 2 clients, so I had an 1 1/2 hours to kill. I decided to utilize my time wisely and finally begin some Christmas/Hannukah shopping. The Galleria was just down the street. I got there in no time and the parking gods were in my favor.
The mall was filled with a festive holiday atmosphere. Everyone was madly running around shopping. I went into the ever popular Apple store to make a purchase. When that was done, I decided that was enough for me! I wasn't up for anymore shopping....was actually tired, so I took advantage of the seating in the middle of the mall. I sat down in a corner and people-watched. The air was heavy with the sugary scent of Aunt Annie's Pretzels kiosk nearby. It was tempting but I resisted the urge to get one.
Families, teens, couples, and single people walked by.Their arms laden with shopping bags. Lots of laughter and good cheer in the air. Everyone looked so happy! I was envious of their seemingly carefree airs. I felt like Scrooge. I couldn't get into the spirit. My heart felt heavy with fear. All I could think of were the "what-ifs"...... "what if he can't handle the chemo?", "what if this chemo doesn't work?", "what if he gets worse?"......... and on and on, and on and on.
I shook my head to clear my thoughts. Everyone has some turmoil or sadness in their lives. We're not the only ones dealing with hardships. They're all just coping a lot better than I am. I know I'm not dealing with this well at all. My husband has gone through all this with grace and dignity and definitely sadness but I'm scared shitless and I'm angry.
Angry at God, angry at my husband, angry at all the happy people, and just plain angry. Why couldn't he get some other form of cancer?! Something with better odds! Certainly I realize how utterly ridiculous I sounded but I was lashing out at everything and everybody. I'm not proud of how I'm dealing with this. I feel like a big baby but I can't help myself.
I do work hard to maintain my composure around my son and my husband.....but underneath it all, I'm fuming. I realize I eventually will get to a point of acceptance but I'm nowhere in that vicinity. yet. Still going through the stages of grieving. Not ready yet to adjust to our new "normal".
I sat there awhile longer, just spacing out. Trying to turn my mind chatter off but all of a sudden I started to feel tears burning in the corners of my eyes. I tried to ignore it but it was clearly futile so I stood up and headed to the escalator leading into the parking garage. I walked with my head down so no one would notice my tears and hopefully I wouldn't see anyone I knew.
I quickly found my car, unlocked it, sat in the drivers seat, and turned the ignition on and just sat there while I sobbed like a baby for a few minutes.
Sometimes you just need to cry.
So I had my moment of self-pity. I was done. I fumbled in my pocketbook searching for some kleenex. Wiped my tears, blew my nose, and drove off to get my hair trimmed and then finally spend some time with my mom.