April 20, 2015
This was first posted in April 2013 as a memoriam for my mother. It was long overdue.
Sixteen years. It has been sixteen years since I last saw my mother, me sitting beside her bed jabbering away about everything and anything. This entire ‘story’ is from my own point of view and how I experienced my mother’s death. This is how I staggered through those final months. (I have also made a really beautiful slideshow of her life as well…… long overdue. It will follow this shortly).
Not only is April 20, 1999 an infamous day in history – people remembering all the poor souls who were gunned down at Columbine High, it is also a day of painful loss to my heart. To watch someone you love die, before your eyes, no matter how prepared you think you are for it….. it is a cold, harsh, brutal stab to the heart. (And a kick to the gut, too). And this year the anniversary falls on Easter, which makes it bittersweet in it’s own way.
My mother and I were very close, we had a special bond, and she was such a special lady. She had grace, class, was kind and caring. We were alike in many ways: She was very quiet and shy, and believe it or not, I was once like that too (long ago); we were/are both modest- her more so than myself; we enjoyed the same music and loved putting together family festivities. We both had a gullible and naïve side to us as well. I was a happy youngster and teenager but I was shy and would easily become embarrassed if someone looked at me sideways. It kept me at bay from venturing out and meeting new people, let alone trying new things. Mom was like that too.
There were also areas where we were far from alike, in our thinking or how we viewed things. In my very first blog (titled Reflections) I talked about how I wanted – and needed- to shave my legs, needed to wear a bra, but mom was against it because I was too young in her eyes. Another area: Birthday parties jumps to mind! While growing up, I always told myself that when I became a mother and it came time for birthday parties, things would be so different than how my mom handled our birthdays as young children. While growing up, when Patti and I were very young, the only birthday parties we had were with the relatives. So in a word- Uneventful! There were no decorations or games or anything memorable. Other than having cake and ice cream, with aunts, uncles and cousins present, there weren’t any fun times (as in games, prizes, goodie bags and the like) that jump to my memory.
It wasn’t that my mom was unsentimental or lazy, not at all…… it was the way she was raised. Her mother was ‘old‘. Seriously old. My grandmother personified the perfect image of an old Italian woman who ‘came over on the boat’. According to my mom, her mother was very ‘old country’ and was strict. Mom told me she had no fond memories of her childhood and how she would cringe when it was her birthday or a holiday party at school where you send in treats. My grandmother would send my mom a brown paper bag filled with saltine crackers to hand out. (Yeah, might as well pin a big red bullseye on her back, Grammy… good way to become a bully’s object of desire)! My mom told me she politely told her mother she did not want to bring the bag of crackers but HAD to. Mom never went to other kids’ parties either, she wasn’t allowed to go. So I always related Patti’s and my lack of fun-filled children’s birthday parties on the mere fact that my mom had NO clue as to HOW to throw one. I always made sure my kids had a party and all the hoopla that went with it (heck, I still do). When baby sister Lisa came along many years later, after me and Patti were well into our junior high/high school years, mom learned a thing or two and Lisa had fun-filled, decorated themed parties. Lots of them! And when my kids were babies, mom had taken cake decorating classes and would bring over beautifully decorated cakes. Birthdays, showers, holidays…. she did a complete 360 from our lack of parties back to when I was a kid.
So, in August 1996, when her world (and ours ) was about to be turned upside down, it was the start of a tumultuous, roller coaster ride. A ride that ended horribly. Mom endured two major abdominal surgeries to remove the monsters of tumors, and I can’t remember how many rounds of chemotherapy she tolerated. In addition, she was administered some new experimental drug that was a ‘trial study.’ (Huge Mistake)! A few months before mom passed away, she was confined to her bed. During this time, on each visit with her, I would sit beside her and just try and imagine WHAT was going on in her head. What was she thinking- and if she knew what was actually going on inside her body. She would NOT discuss that there was no cure for her. She would not discuss death or dying, period. She would not admit out loud that she was going to be leaving us. I watched her lie there day after day, month after month, and see her stare at the television screen, knowing her mind was never fully paying attention to any of the shows. She was fully coherent and her mind was completely intact but she basically closed herself off to us… when it came to anything other than small chit chat. My dad would physically do everything for her that he could possibly do, being her constant care giver. In addition to taking care of her basic needs he handled all of her medical related issues: unhook this tube, reconnect that tube, dump her ‘bile’ container/pump (that’s what I called it), fool with the catheter tube, clear out the NG tube going up her nose, down her throat and into her stomach, and each night give her ‘nutrition’, which was called TPN (Total Parental Nutrition). Mom would receive this nutrition through a catheter tube connected to a needle, in a vein that was dripped through a port into her chest. (This kept her alive—- but also ‘fed’ the tumors and made them grow larger and faster….. A big Catch-22). When I would sit with her, I always wanted to SCREAM “What are you thinking? Talk to me about the ovarian cancer and it’s death sentence!” This is another area where her and I were (and are) so different. I would want to discuss my impending ‘demise’, whereas she couldn’t even mention the words death or dying. (Don’t get me wrong, I am in no rush to sprint on over to be first in line at those pearly gates! This terrifies me to my core– but my reasons are probably different than hers were). I know she was petrified and just couldn’t bring herself to admit that THIS was how it was going to end, her final curtain call……. but I would want to have closure with everyone. After years of reading books and watching a multitude of movies with ghostly spirits coming back for a visit (or a good haunting), I wanted desperately to MAKE SURE that if this was the case, that she ’PLEASE make contact with me in any way she could! Just let your presence be known mom!” As paralyzed with fear as I am regarding things that go bump in the night, I wanted her to know that I would gladly take ANY ’visit’ from her in the hereafter. A creaking door in the night, a poking in the arm, chains being rattled, heck, I’d even be game for a good slap across the face! Just come back and see me, mom! The desperate pleas I had going on in my head became so frustrating (and loud) because there were questions I had for her, and it was impossible to blurt them out. I did not want to cause her body any more undue stress that she already had going on day in and day out. (I did talk to her on her last afternoon though …… at length. Granted she wasn’t completely aware…… or so I thought.)
Never in a million years would I have imagined her to be stricken with cancer. Cancer? Not her! And being diagnosed at such a late stage (lllC which quickly became stage IV), and the type was an aggressive form of ovarian cancer ……truly didn’t help matters any. The word SHOCKING was an understatement. Apparently it is typical that women find out too late: 75% of patients diagnosed with ovarian cancer are diagnosed with Stage III or Stage IV ovarian cancer. Such was mom’s case. She wasn’t an old woman either, she was diagnosed when she had just turned 60. The woman was never ill prior to this. I can’t recall her ever being sick while I was growing up so this was such a blow. In more ways than one. In fact, when this demon of a disease became known to her, she had been on the Colorado River in Bullhead City riding Sea-Doo’s with my dad and friends. After experiencing excruciating abdominal pains while on the river, she went to the ER. The nightmare began……
When looking back throughout those two and a half nightmarish years, she must have felt so alone. Even though she had my dad 24/7 by her side, and I went everyday after my job for as long as I could stay (which was only an hour and a half a day weekdays), I felt she was trapped inside her own mind. (She couldn’t understand WHY her doctors didn’t want to see her. She hadn’t been to her internist or oncologist in months, for the mere fact that they said there was nothing they could physically do for her any longer. ) She had home health care nurses come out and do whatever it is they would do, and they in turn would report back to the oncologist. She prayed and prayed and believed there would be a miracle, hoping it would burst before her any day. Because of her denial (that she wasn’t going to die), she refused to have hospice. She would become so upset if it was brought up. I assume mom thought we were trying to RUSH HER OFF THE CLIFF, or, if she agreed to having hospice, THE GRIM REAPER WOULD SET UP CAMP AT THE FOOT OF HER BED, WITH BONY, SKELETON FINGERS OUTSTRETCHED, urging her to go for a walk with him. All the while, I would sit by her bed and have lists of questions I wanted to ask her, but wasn’t able to. Trying to be a good, caring and compassionate daughter, I’d talk to her and smooth body lotions on her arms and legs and feet and think to myself “Why do bad things happen to such good people? WHY?”
When she finally had a morphine contraption hooked up next to her bed, she was more relaxed but had weird visions. I would always wonder WHY or HOW she lingered for so long. She hadn’t had water or food for a couple of months because her stomach had been pushed up into her throat, due to the tumors that had grown back in her abdomen. Nothing could be taken orally, hence the TPN infusions she received nightly. I’d focus on my thoughts and conclude that it was so unfair to her, to be a prisoner in her bed, with no future of any kind. Just waiting to die. I have always prayed, and it was becoming clear to me during this depressing, gut wrenching time, that my prayers were not being answered. Or heard. At least not in the direction I wanted them to go. So I figured I would try another approach: I would pray my heart out constantly and ask God to please put her out of her misery. Please TAKE her ‘home!’ But it would be months before that happened. (Where was Jack Kevorkian)? I would make myself sick with all the thoughts I’d have, of not having her in my life anymore, and knew I was being selfish. I wanted her to ‘hang around’ a little longer but I knew in my heart that her time was up. Had been up- – for a long time now. During the entire time of watching her life slowly drift away, I never fully understood WHY (or HOW) this woman suffered and lingered for SO long. What was the purpose? I came to my conclusion after deep soul searching for years, that as awful as this might sound, maybe we never know how good of a life we have until we see the other end of the spectrum. That bad things, really terrible things, happen that we have no answers for.
When she finally agreed to hospice, it was such a morose, sick-at-heart moment. (And one she didn’t willingly go along with at first). Dad, myself, and my 2 sisters sat at the kitchen table with the woman from hospice while mom was upstairs in her bed. We had a baby monitor at the time next to her bed and one in the kitchen and I had hoped to God that it wasn’t turned on at this time. With all the explaining of ‘what is going to happen to your mother’s body over the coming days’ talk that was going on, she did not need to hear any of this. (Hey, I didn’t want to hear about it). Hospice told us there would be NO MORE ‘nutrition’ to be given to her nightly, and that she would be gone in 10 days. That was a sucker punch to the stomach, knowing we now had a date! I still had so many things I wanted to say to her and ask her, and I felt totally helpless.
Several days before she died, mom was still alert and knew what was going on. Dennis and the kids said goodbye to her. Luckily for mom’s family (her sisters, brothers and nieces and their families) they got to say goodbye to her as well that day. I wasn’t in the bedroom when they all visited and don’t know what was said to her, but I was thankful they got to say their farewells. I still remember, on April 17 (3 days before she died), Patti, Lisa and I were by her bedside and she agreed to pose for a picture with us. One last picture. Looking at the photo now seems so surreal, because of how mom looked in this picture! This is NOT how I remember my mother. This once vibrant woman was still there mentally but her body was ravaged by cancer. On this day, and as she had been for several months, just laying there in her bed, worn down and her body and spirit broken, she agreed to have her picture taken with her three daughters. A cherished memory for me.
Seven days had passed since hospice came out and placed the DNR paper on the refrigerator door, and mom’s brain lapsed into something that I can’t even explain. She stopped talking and her eyes never closed. NEVER CLOSED! They were wide open and the eyeballs shot rapidly from left to right and so on and so on. Non stop. For two days. I had never seen anything like this before, but the book hospice left us to read, mentioned something about it briefly. (Brain dying). I was so thankful that just 2 days before this latest episode developed, she was chatty, alert and we had our photo taken. On this day, I could see that her ‘spirit’ was on it’s way out. It wasn’t mom lying there any longer, it was a shell of her.
On day 9 of having no nutrition being pumped into her, she began her journey to the other side. When hospice came out 9 days earlier they had given a book for us to read. It told what the body will do and what you will notice as the dying process begins. I’d sit in her bedroom with book in hand and ‘try‘ and ask mom questions in my own ‘Lori’ way, shortly after she was under their care, but it went over her head (I think). Hey, these were the steps that were ‘supposed’ to happen, I wanted to see if she was on course. I figured it out on my own, though, just through observations. Prior to the weekend before she basically ‘left us’, she had visitors. Her friends – a man and a woman- came to see her. They were sitting in her bedroom on either side of the bed in chairs. The man looked a little shaken up after looking towards the doorway into the hall. My mom was looking at the doorway too and then saw Dick’s face look a bit ashen, so she smiled at him. She asked him “You saw it too?” Apparently Dick said he saw a tall, white colored hazy shape move down the hallway, past my parents bedroom. My mom saw it too. The next day at my elementary school I told two nuns who were teachers there what happened the day before. They said ‘her time was coming up, very soon.’ This white haze was the ‘angel of death’- they didn’t put it quite like that, their terminology was ‘nicer’ but that is what it came down to. A presence that would guide her and watch over her. (It gave me the willies at first, but basically that is exactly what happened).
On her final day with us, I went over to see her on my lunch break from the elementary school I worked at, which was just around the corner from her house. Walking through the living room, dad had the TV on and images of a what looked like a war zone was splashed across the screen. There was a lot of horror being shown on the screen, now I have to go see the horrors that await me upstairs. (It wasn’t until I went back to school that I learned of the Columbine shootings). As I was climbing up the stairs, I immediately noticed a horrific stench. It was not anything I had ever remotely smelled before. Getting into the bedroom where mom was, I could see there was a major mishap going on with her ‘bile’ container, along with a mishap going on with an unclosed hole (wound) she had in the side of her abdomen. (I now know what it means when you hear the words ‘ the body is shutting down’. Very unpleasant experience). I still had so many things I wanted to say, and Good Lord, I was going to say what I wanted her to know! Her eyes were still wide open, zigging and zagging left and right and she just stared straight up. When I got done babbling and telling her how much I loved her, admired her, appreciated all she ever did for me in life, and that I would miss her every day for the rest of my life, I bent over her and kissed her forehead and said “I Love You Mom.” Her eyes flickered over to me, finally leaving that staring-straight-up stare, and she whispered, clear as can be “I love you too.” She heard everything I poured my heart out there for her to hear! Everything! I told myself once again, that I would have handled the entire ‘dying’ process differently. I would want to let my children say what they needed to say while I was still HERE! And me being me, I’d have quite a few things that I would want my kids to hear! But, we were two different people, mom and I, from two different generations.
After I ran back to school at the end of my lunch break, I was back at the house immediately. Patti and Lisa came over shortly there after and my dad was downstairs, leaving us girls to be with mom. Over the next couple of hours, we sisters laughed and talked and cried. We shared sorrow, joys, tears and laughter. We were trying to be in good spirits, even though we knew THIS WAS IT. I had the clever idea to ‘hum’ music to her. Figured it would be comforting, soothing (I’m no singer but I figured why not liven up the mood. I LIKE to think it helped). Patti and Lisa were game, so my brain began spinning. Elton John…..Yellow Brick Road? Deborah Harry….. Maria ? Celine Dion…. My Heart Will Go On ? Nah, I chose Cat Stevens’ ’Morning has Broken’. A nice, mellow 70′s song. Why Not? (It was a simple tune, easy to entertain ourselves with through this agonizing afternoon). We hummed that song repeatedly for I don’t know how long– an hour and a half or so. We tried not to make light of the situation, I mean, WHEN is death an enjoyable time, but the horrendous odor that was escaping from her leaking wound (hole in the abdomen) was physically killing our sense of smell! SO we had whatever we could grab nearby: scarves, t shirts, anything, and wrapped it around our noses and mouths and kept on humming. We looked at each other and tried so hard not to laugh – and that was hard NOT to do. There were smiles and giggles and some real LOL moments. We looked like complete morons. But loving morons. When mom’s breathing began to stop often, we timed it. I mentioned to my sisters that this was very creepy and very ironic. It was like timing contractions for a birth. Here we are, timing how long her breaths stopped – for an ending to a life! It was like the whole contraction business, but with a reverse outcome. When she’d stop breathing for 60 seconds, every 25 seconds or so, dad phoned hospice. They said ‘death would be imminent.’ (No kidding)! I don’t know if I was ready for what we knew was going to happen, but the time WAS HERE, now. The moment we have awaited for so long. The moment we have dreaded for so long. I won’t go into what we saw happen to her body, physically over the next 30 minutes (unfortunately I will never forget this scene) but she passed away at 5:30 pm on April 20, 1999. My dad contacted the funeral home and they said someone would be out soon. We girls decided that we couldn’t send my mom off looking the way she did at that moment. (Another NO KIDDING moment). We changed her nightgown, brushed her teeth, cleaned her up and she was now, finally, laying peaceful in her bed. The bed where she had laid for months….. waiting to die. So many emotions were running through my mind. Relief, gut wrenching tears, sobs and the realization that I no longer had my mom. My father didn’t have his wife. My girls had no grandmother any longer. My best friend was no longer here. Such a loss for everyone.
Obviously, mom was there in the bedroom on that final afternoon, listening to us as we talked to her, humming our hearts out to her, and grieve over her. But I’m certain she wasn’t in that body on the bed. I wish to think of her as watching us from high up in the corner of the bedroom and shaking her head asking “What are those crazy girls doing?” as our Cat Stevens rendition was being hummed with rags on our faces, over and over.
Before experiencing the death of a loved one, I viewed the prospect with dread! (Massive amounts of dread!) Looking back on those horribly grief-stricken months, it nevertheless brought certain gifts. Among these: insights into selfless love, compassion and caring and inner strength.
Even though mom and I were different in so many ways, I like to think I inherited some of her qualities. Two people can be so different, personality wise, yet so alike in other ways. I hope I have retained even one ounce of my mom’s dignity and grace, because she was a truly, amazing lady.
I Love You Mom. (And I do know you heard everything I spilled my heart out to you on that last day. And you HAVE found a way to make your presence known).