I cannot believe my mom is gone… I'm suffering so much.
Published on: Feb 5, 2014 @ 0:04 –
I’m suffering so much trauma right now, I’m lost, devastated, haunted, scared and just full of so much anxiety. I have kept quiet on my blog for so long, just wishing to forget 2013 ever existed. Good and bad things happened in 2013, but no way did I ever believe that on New Years Day that I would only have my mommy around one more month. I don’t know how to cope with this. I brought her here to Florida to live with us and for us to take good care of her, not for her to die. If I knew she only had 5 months to live, god, I would have done so much more. Complete devastation wouldn’t even begin to describe what I’m going through. I’m not at peace, I don’t believe my mother was at peace with what happened, and I don’t believe she will rest in peace.
We knew my mom had cancer, stage 4, and was treated until she “chose” to go off long-term disability through her work and onto social security, where she couldn’t get medicaid until she had been disabled for 2 years or dirt poor to qualify. Well, social security gave her $1400 a month, so in Michigan she had nothing. Here in Florida, in August she was approved for their “cost of share” program, which was enough because I knew how to work the system after I researched it. I begged my mom to get her ass on the phone to find an oncologist. No, though, she was fine, she acted fine, acted like she was in great health. We went to the beaches, St. Augustine beach & light house, a rocket launch, magic kingdom with my sister and saw her engagement, alligator hunts, etc. We did so much, until the end of November. November came around and we took her to Jetty Park to watch a rocket launch. Well, they have a long pier we like to go on to watch it, unfortunately, it’s like a half a mile long it seems. About 2 weeks prior she started to really slow down and complain. She started to sleep a lot. I got frustrated at her because when we got to Jetty Park, she couldn’t make it 100ft. I got mad at her, I thought she was putting on a show. My mom has a history of being generally kinda lazy, so I kept pushing her. I feel so bad for doing that now. My mom also has a history of kinda amping up her problems a little more for “show” I used to like to say, so did my grandma. Like my grandma would walk just fine, but when she’d get in a doctors office, all the aches and pains suddenly surfaced and you’d think she needed a stretcher to leave. I figured this is what she was doing or preparing for. My sister was due to arrive for a late Thanksgiving 2 1/2 weeks later, and she had a habit of making it out like she needed so much help to my sister. That’s just how my mom was. I also figured well maybe she just didn’t want to walk so far, and had to come up with an excuse to stay back. I figured if my mom was so bad off, why the fuck wouldn’t she go to the damn hospital.
My sister arrived Thanksgiving night and upon arrival my sister cried when she hugged my mom at the airport before we were yelled at to leave, and instead of turkey dinner, we all ate at Golden Coral. We were all supposed to go to the beach and magic kingdom that weekend. It ended up being a rainy shitty weekend in general. It was tropical to Beth and Terry though, where they came from in the frozen and extra snowy winter in Michigan made them think the 60’s were hot. We went to the Merritt Island National Wildlife Refuge as we always do to go to Playalinda beach, and do our “alligator drive” to find some gators. It was far too rough in the seas to actually swim, but we had so much fun sitting on the edge of the water, being pummeled by 6ft waves. My mom just sat in the chair in her bathing suit and just kept saying, man, the power and the beauty of nature. Caitlyn and Ava brought her some sort of flower, while Terry enjoyed the ocean because it was his first trip anywhere, and his first time in the ocean. It was so windy and the waves were so rough that the seas had churned up so much seaweed, more than I’d ever seen before on that beach that Andrew and Chris were running around like little bushmen covered in the stuff head to toe. We didn’t stay terribly long, as for us newly acclimatized residents, we were getting cold. I was prepared and brought my zip up jacket.
The following day, as much as my mom didn’t feel like doing it, we ALL went to the Magic Kingdom. It was also my moms first time ever to go there. We had no idea that once we were in there, that Terry FINALLY proposed to my sister in front of my mom in front of the castle after dating for at least 3 years I believe. My mom had to have a motorized cart, and I struggled like hell to get her into the park in the first place because it seemed like I had to push this incredibly heavy wheelchair (mom + ava) up hill to the ticketing counter before going downhill to the ferry boat. My mom was so happy…. she’d finally get to plan another wedding. Planning weddings was like my mom’s dream job, and from that moment, could not wait at all to help with her dress and make her a throw away bouquet. Mom and I even went to Hobby Lobby (our last trip to the store together) so that she could look at the fake flowers. Right now I’m finding it so difficult to hold back the tears while writing this that I hope I can finish it. We wanted my mom to be as much a part of it as we could being 1200 miles away so we planned to go in June or July to dress shop for my sisters birthday. I also wanted Beth to come down for Mom’s birthday in March.
When my sister left, it was the very beginning of December. We had Christmas to plan for. We went out and bought a real Christmas tree, and we decorated the outside of the house real nice. It was the first tree we could be extra proud of, and my mom loved it. She didn’t get paid for December until Christmas Eve, so it was then that my mom went out and got an electric cart and did her Christmas shopping for the kids. She got Andrew Bioshock and Zoo Tycoon for the Xbox and Chris got Grand Theft Auto 5, which I wholeheartedly disapproved of, and some other stuff, as well as a doll house for Caitlyn and a baby stroller for Ava. My mom thought the world of Caitlyn & Ava, and Ava would always crawl all over my mom, sometimes hurting her, just so she could lay upside down on her lap and say, “gickle me” which was “tickle me” and my mom would tickle her.
I got my mom a working laptop again a few months ago so she was enjoying playing her games on Facebook. God, I can remember seeing her in there in the dark with her glasses on and her laptop going and hearing her make comments when she lost it all playing angry birds, bubble shoot, zuma, or something else she loved. For Christmas I bought her an expensive foam pad because she convinced us it had to be the comfort of the bed making her hurt. I never really knew if it helped, but now that she is gone and knowing what I know now, I doubt it helped but she would never tell me it didn’t. My mom has been in denial her entire life, but even worse is she was in denial about her health. She’s going to live 20 years she would try to tell us the docs said, even though her best odds at stage 4 were about 5% over 5 years, but we had hope still.
My brother and Rachel arrived the day after Christmas, and about 4 days later my mom went to the hospital for the first time. I stayed the whole night there with her when they told me her cancer spread to her bones and her liver. I immediately had a freak out, I imagined a quick painful cancer death, because it seems that’s how every person in my family dies…. except grandma who starved to death for 17 days in hospice. My mom was in denial then. She was in the hospital for 3 days when the doc told me that she would be fine continuing on her 1 pill of Anastrazole per day, and I asked him for a prognosis and he told me it was up to the man upstairs. Not what I wanted to hear, but I was ok because you know, he said chemo wasn’t even necessary and we were so happy because we had that whole conversation on video. She was discharged on New Years Eve and we celebrated, I bought some pastries and some coconut rum at Publix… the nice one near Celebration hospital, but since my mom was drugged up from her hospital visit still, she turned in before the ball dropped. We had a good night lighting off what was left of our July 4th stash of fireworks, I was happy my mom was home, there was reason to celebrate.
We went to the oncologist, who happens to be my hematologist on the 6th of January. Again, her prognosis was ok, he asked if she’d consider some chemo if necessary but that this stupid pill would be enough. She got a script for some percocet and we went home feeling pretty good. Paul finally went home like 2 days later because a snow storm had kept him here a week longer than I wanted, and he started having some attitude about the notion of leaving. So, I believe my mom went back to the hospital on the 16th of January because she sucked down percocet at a pace that would kill a normal human, so we knew something was up. She had also yellowed. I figured it was the tylenol content in the percocet that did that, because she had 85 in 3 1/2 days. Matt had just returned from a business trip so it was ok to take my mom in.
We returned her to Celebration hospital where Dr. Tempel was waiting for her in her room before she even got there. He was a good doc, he helped me with my broken finger when we first moved here. He read her chart from her prior visit, but now that I look back on it, he must have known she was in bad shape because they immediately started IV drugs and here in Florida, since they have a problem with opiate abuse, they do not just give out pain meds like they do in Michigan. They do all sorts of tests first to see if you are telling the truth or have reason to believe you are in pain first. The first time my mom went to the hospital they made her wait 5 hours before giving her anything. I had no reason to believe this would be anything more than pain control and another 3 or 4 day stay.
They had a power of attorney form on file that I had taken in the first time because I knew something like that should be on file in case something went horribly wrong. They had my contact info and everyone elses’ too. We went to visit my mom several times, and I never got any information. My mom always told us she was doing fine and nothing new in terms of news. Ok, so why are you on so many pain meds and why did they start chemo? I talked to nurses, and they gave me limited information and told me to talk to docs, but you could never catch the doctor. A week passed… my mom now had a bed sore from not moving. She also had started hallucinating about the kittens and my kids being there. We all thought it was pain meds because they do that to you after you’ve been on them for so long. I kept asking what the plans are for coming home, “oh a few more days”, and then one day she told me “tomorrow”, so we prepared for her to come home. Julie and Joey were due to arrive on the 29th for a trip to go to magic kingdom and islands of adventure as well as the beach so being the 25th of the month I knew we were cutting it close. I kept telling her, whatever day you come home, just make sure it’s not Friday. Friday we’d be at magic kingdom all day long and I wouldn’t want her stuck at the hospital and not be able to get a hold of us. I went up to the hospital on my way home from my docs appt. which ran really late on the 27th, so I got to the hospital at 5:20 and had to be out by 6 because I used valet and they closed at 6. I brought her some candy and a pepsi. She was fine, still a little loopy, but I had hoped to catch the doc, or get some more info from a nurse. I missed the doc by 30 minutes my mom said. I told her that I would bring her up some Marie Callendar’s coconut cream pie the following day. Something happened that I couldn’t make it the next 2 days so I called her instead. I also called a nurse and tried to get some more info since Julie was coming in on Thursday. Wednesday night my mom told me she might be home on Friday. Ok, so we cleaned and prepared the house, just to make it nice and organized. I put pictures on the wall I’ve been meaning to do since we moved here. I don’t know what told me to do it, I just did, but they were collages of my mom and family. I didn’t talk to my mom Thursday because Julie arrived that evening. I hadn’t heard from my mom so I figured ok, well I guess she won’t be coming home the next day. I had been up for days in a row already for god only knows what reason, but Thursday night I tried to pay attention to the weather. It ended up being a washout of a day, in fact, the whole weekend it decided once again to rain all weekend at the last minute. It wasn’t supposed to be like this. So Friday morning we are sitting there pondering how to do this. We decided we’d do magic kingdom the next day instead and we would think of something else for that day. While we are sitting there, this woman leaves a voicemail about 11a.m. saying they were calling to discuss my mom’s discharge. I was like, ok, well, good thing we didn’t go anywhere. I called this woman back, and one of her first sentences involved the word hospice. Immediately I broke down… she acted like I should know what she is talking about. I freaked out, cried relentlessly, and had Matt take the phone. Julie was next to me and she kept asking me, “What, what, what is happening”. They wanted to arrange hospice care. What the fuck did I miss here? Nobody told me that my mom was dying let alone rapidly!? I have the recordings of everything because my phone does it automatically, except when I purposely recorded when I went up to the hospital with Julie immediately following that phone call. I have my last conversation with my mom recorded and I didn’t even realize it.
My mom came home 30 hours later, my sister didn’t make it here in time, and my mom died 13 hours after she got home. I never got a chance to see her awake again after seeing her at the hospital where she told me she was convinced it wasn’t over and then took her final drink of pepsi with such happiness and went to sleep, being sedated on purpose. I just can’t believe it. I can’t finish this story right now it hurts too much. The memories I have, the new kitties we have that she loved so much, the wedding that won’t get planned by her or paid for by her like she wanted, the dress shopping she won’t get to do, and the burial she won’t have because she had no life insurance. I can’t watch duck dynasty anymore, it was my mom’s favorite show, and I made sure she passed away wearing her favorite “Uncle Si” shirt. I never finished re-chaining her duck dynasty cross I bought her, and my little girls never had a chance to say goodbye or give grandma hugs. I have so many unresolved good and bad memories that I cannot rest in peace. She was afraid I’d donate her to science like I did with my dad (but he would have been ok with that) that the fact we are forced to cremate her I don’t know if she is ok with. She died in denial, though I know she knew she was at home.
Nothing can ease my sorrow. I lost my baby Junior in September, which was traumatic for me, and sudden as well. I will never recover from PTSD as long as traumatic events effect my life so often. I pray to god that my mom is at peace, and that I can find peace, and I can have a trauma free decade so I can just recover. When I signed those hospice papers it felt like I pulled the plug all over again like I did with my dad, except my mom watched. There is no therapy or pill that can take this pain away. Writing is my only outlet, my only form of therapy. I’m so happy that while unfortunate for their vacation, my best friend Julie was here by my side from start to finish, but when she left and closed the door behind her, loneliness infiltrated my heart and my home. Yeah I have a husband, unfortunately it’s not that comforting and he don’t talk to me. My mom had become my company, my friend, everything, especially when Matt would go out of town. She sat outside every day while the kids swam in the pool. She also shared the pain of some events I have been through in the past few months. She finally understood my medical condition when she would see me out of nowhere sleep for days, and saw me go to the hematologist for infusions weekly. She never saw me improve, and she hoped for resolution in my case. My mom’s cancer and how she died just makes me fear that someone is missing something from me. I want to be around a long time for my kids, and would never want them to lose both parents so young.
I’m just so lost. Where is anyone when I need people to talk too……… if I survive this stress, this new traumatic event, and come back stronger, I will be amazed. I have so many videos of my mom in the hospital, the kids and her watching youtube on her fancy tv… just no expectation that she would die. The hospital is going to get a very heated letter from me at the least about the communication problems, as well as the condition of my mom when she came home. Celebration is a good hospital, but 2 major problems I have with them need to be resolved. There’s no excuse for me to be robbed of possible time spent with my mom by telling me the day she’s to go home she’s going to die. They knew prior to then. If I would have known, and I could have, I would have never left my mom’s room that week. My mom didn’t die from a sudden heart attack or stroke, I had time, I was just robbed of it because of lack of communication. It just makes me sick. God help me.
Every 10 days in February there is an event. 02-02 is when my mom died. 02-12 is Caitlyn’s birthday, and 02-22 is Andrew’s birthday. He wanted grandma to go to Legoland for his birthday. I’m so sad my mom isn’t around to see Caitlyn turn 5 and Andrew turn 9. I’m just devastated. Grandma was last around to celebrate Matt & Ava’s birthday in October. We never got to celebrate mine in Oct. 🙁
