Both a Savior and a Killer

Even though I am completely aware of the multiple co-morbidities my mother possessed prior to death, I can’t help not feeling that a drug that was given to her to save her life was the actual cause of her death. What was the drug?
Brilinta: A drug given to patients after a heart attack of heart surgery to prevent a heart attack and/or stroke. The drug is supposed to prevent the formation of blood clots.

But as we all know, the most well intentioned and high performing drugs come with possible adverse side effects that can even lead to death. And sadly, my mom fell prey to the most adverse side effect listed on the website for the drug. https://www.brilinta.com/safety-and-side-effects/side-effects.html

My mother died of acute blood loss, which I believe was caused by the Brilinta. Prior to being diagnosed with Brilinta, she had no trouble with major bleeds in the GI track. But since March, almost a month after having heart surgery and being prescribed Brilinta, the episodes of acute blood loss started occurring quite frequently. The doctors would stop the blood thinner (Brilinta), but would warn us that she could have a stroke or a heart attack for not being on the drug. Then once the bleeding was under control, they would put her back on the drug to prevent a fatal cardiac event. But what would happen a month later? She would be bleeding internally all over again.

It was an awful see saw of treatment methods to try to save her life. If she didn’t take the medicine, they were sure she would die. If she did take the medicine, they weren’t sure of much. I say this because they could never track the bleeding. They would just give her blood transfusions until the blood count would increase and then hold steady at a manageable level.

This most recent time, her blood loss was massive. She had lost so much blood, the doctors were shocked she was still alive. The doctors said she was surviving on a fourth of what a normal person has in their body. They told us she needed five pints of blood products transfused in her body to save her life.

But my mom guaranteed her death by refusing to continue with another round of blood transfusions. This time, she said no to any medical interventions to save her life. The doctors still had no clue where she was bleeding from. And my mom was tired and ready to go. So, the doctors respected her wishes and sent the blood products back to wherever they came from. And less than 24-hours later, my mother was dead.

My heart grieves as I write this because I know that Brilinta, the drug that the docs gave her to save her life, was the drug that ended her life. How freaking ironic?

I’m not mad at the manufacturers of the drug though. I’m not mad at the doctors that prescribed the medicine. I’m not even mad at my mom for refusing the blood transfusions.

I’m just mad. Not sure at what or who though…

I’m for sure mad that my mother is gone.

I wish there was no need for Brilinta. I wish that my mom never needed a blood transfusion. I just wish that my mom was healthy, well, and right here with me.

With all of that being said, I do plan to report to the FDA that I believe that my mom died because of the adverse effect of Brilinta. I think it is important for the FDA to keep a documented count of the patients that did not respond well to this drug.

Here’s the FDA website that I’m using to make the report.
http://www.fda.gov/Safety/MedWatch/HowToReport/ucm337471.htm

Always on my Mind

So, I’m running to the computer to stop myself from crying.

It appears that I get some kind of solace from writing about my grief and sorrow. I don’t know. Well, until I figure it out, I’ll be using this 2015 version of the pen and pad to help me cope.

I don’t know why Mama just crossed my mind all of the sudden. Heck… What am I talking about? She’s constantly on my mind. I don’t know how to get her off of it.

The truth is that it feels sort of like a betrayal to try to push her out of my head. How dare I try to not think of her?

I wonder how long will I feel like this? Will I ever get to a place when I can wash dishes, lie in my lover’s bed, enjoy a great dinner, listen to an emotionally driven gospel song, or fall asleep without thinking of Mama?

Do I even want to get to a place where I don’t think of her all the time? I’m not sure. I think so. But again, how can I let my thoughts of her escape me without feeling bad for leaving her behind?

I wish I knew I would have had all of these thoughts and feelings upon her death before she died. I would’ve certainly handled my time with her differently.

Oh, well… It is what it is. I can’t recapture the past and make it into something new or different. The only think I can do is remember it for what it was. And one thing I am glad of is that my memories of Mama are for the most part fond. The only memories that bring me pain are the ones that contain my and her physical health problems.

Good night, world. I’m going to read a new book. Interestingly enough, the book is called Memory Man. Isn’t it a bit ironic that I am now thinking about my memory right before I picked up this new book?

Mom's Funeral-Daddy's Birthday Party

I’m been feeling a lil’ better the last couple days. I got a good cry out of my system Sunday night. That cry should last me for the rest of the week. 

I haven’t been back in Mama’s room to do any additional cleaning and packing. I suspect that I’ll do a little over the weekend. Hopefully, I won’t get and be emotional.

On another note… I’ve decided to give my dad a 70th birthday party in December. It kind of sort of feels like a betrayal to be planning a celebration of life for one parent while mourning the death of another parent. But it is what it is. I cannot neglect to honor my dad’s birthday, just because my mom won’t have another one to celebrate.

Actually, I think that planning Daddy’s birthday party will prove to be therapeutic and healing for my soul. It’s giving me something to think about other than Mama. And it’s also allowing me to focus on what’s positive rather than the negative.

I’ve learned in this whole process that we should for sure give someone their flowers on this side of life rather than the other side. So, on December 12th, we will shower Daddy with all the flowers his allergies will allow. 

Oh, one more thing… I think that keeping this journal is helping me. I haven’t told anyone about it. I’m simply writing for me and not an audience. Getting my feelings out of my head and heart has proven to be just what the doctor ordered. I’m not sure if I’ll ever tell anyone about this place. If they stumble on it, I’ll be okay. However, I’m not ready to announce this location.

I’ll check in soon.

AB

One Death of Two Mothers

When my mother had her first stroke thirteen years ago, so much of her personality traits, critical understanding, and innate gifts were forever buried by the brain damage caused by the stroke. When she first came home from the hospital, she was simply a shell of a woman. Well, I should say that she was a shell of the woman I knew. Her idiosyncrasies, vigorous laugh, bold wisdom, and basic understanding of the world around her were snatched away by one tiny, microscopic blood clot that got lodged in her brain.

When she got well enough to be discharged from the hospital to home care, I had to sit down with her each day and remind her that she was a teacher, an American, and a musician. The one thing I didn’t have to remind her was that she was a mom. She didn’t know what planet she lived on, but she did know the names of each of her daughters. That’s how incredibly important we, my sisters and I, were to our newly disabled mom.

Although Mama remembered us, she didn’t respond to us in the same way. She would sit in an almost lifeless manner and just say nothing. Her personality seemed as if it was robbed from her by some weird alien being, who snuck to our planet and zapped her soul away.

I pushed, probed, and nudged at her to laugh, to smile, to remember, to even cry. But despite my best efforts, in the first six months post stroke, she just sat there, not mumbling more than a few words a day. She had no requests, no distinct memories, no likes, no dislikes, no regrets, no aspirations, no real self concept.

I honestly feel that my mother… At least, a great portion of my mother died August 2, 2002 when she had the stroke. I grieved for six months over the death of the woman I knew as mom. I would cry, ache, and wish that I could just have one conversation with her. I wanted to hear her sing, laugh, tell a story, teach a lesson, or even fuss at me.

I didn’t understand how or why I was grieving for her so intensely, yet she was sitting in my living room for most of the day. How was I grieving a woman that was still alive? And even though I didn’t understand it then, I was indeed experiencing real grief. Mama had not died per say. She had absolutely changed so drastically, her new persona was not recognizable.

After my grief began to lift after about six months, I had to learn to love the new woman that had emerged during the year of physical, occupational, and speech therapy. This new woman was temperamental, impatient, sorrowful, depressed, and less amused than mom pre-stroke. But I decided to love her yet and still. I knew that underneath the splash of blood in her brain that had drowned a large portion of her intrinsic traits, the woman I would always know as “mother” was there. She was just hidden.

So, I ended up loving two women: Mom pre-stroke and Mom post-stroke. And I must say it was an honor to love and be loved by both.

I suspect that now I’m grieving two women. Perhaps that’s why I’m hurting so badly. In my psyche, I have memories of two women I called mother. And now, both of those women… Both of those mothers… Both of those loving figures are gone.

I need much prayer and support as I adjust to this new normal.

Am I Still a Daughter?

As I read all the National Daughter's Day posts on Facebook, I was forced to pause and reflect for a second. I felt weird, being that I have no daughters of my own, yet I love three little girls (my nieces) immensely.

I also felt weird that I have spent 41 years of my life being a committed daughter to my mom, who is now gone from my physical presence forever as of September 2nd.

Does her physical absence somehow make me less of a daughter because I don't have a mom anymore?

Strangely enough, I do feel like I’m not fully a daughter anymore. I feel that I lost a piece of my daughter status when she slipped away from my grasp the early morning of September 2nd. I feel that as a daughter… A good daughter… I should’ve been able to do more to save her from leaving forever. I should’ve been able to do something to help her live without the physical burden of chronic illness and disability. In a way, I feel that my daughter powers failed my mom. And so, she left me, without me being able to do a damn thing about it.

It makes me sad to feel this way. But I get better every single day.

When Mama left me, I embraced the guilt of her pain, sickness, and even death. I punished myself for not making her life better. All of my friends and family told me to not beat myself up. They reminded me of how much I’ve sacrificed for my mother. But even though I knew all that they were saying was indeed the truth, I still felt like I should’ve done more.

Today, I don’t feel as guilty. But even in my dissipating guilt, I don’t feel that I’m as much as a daughter as I was prior to September 2nd.

I don’t feel motherless or orphaned. I just don’t feel like a fully functioning daughter anymore.

It’s strange. I guess this is just grief in all of its vivid, less than delightful colors.

My Undeniable Grief

One of my sisters accused me of not grieving over the death of my mother like she thought I should. I told her that I’m not the type to put my personal grief on display on a public stage for everyone to see or approve of. It’s my grief and it belongs to me. I’m not interested in getting others to validate my grief.

And the truth is that I certainly have no motivation to convince her, of all people, that I’m truly grief stricken about my mother’s final departure. All of my sisters should realize what a loss I’ve experienced in the death of my mother. For the last thirteen years, I put my life on hold to give my mother life. And the other day, all the life I have given her wasn’t enough. She slipped from my grip and life departed from her as she rested quietly in a hospital room on the 25th floor.

Knowing the professional challenges that I already had because of my disability, I chose to quit my job and care for my mother, who required 24-hours of care and supervision. I put my personal and professional dreams and aspirations on an indefinite layaway plan for thirteen years to be a full-time caregiver to my mother. And now that mom is gone, I do indeed have more free time. But now, I simply don’t know what to do with myself.

From 27 to 41, my life was on loan to the most important woman in my world. I now feel like a lost library book, looking for a shelf to rest on or someone to pick up and read to gain knowledge. Not only am I sad about Mama’s death, I feel void of direction.

I’m 41, with a significant disability (total blindness), no kids, no husband or significant other, no full-time job, no significant ownership in any property, and no Mama to take care of. I’m not only grieving for Mama, I’m grieving over what has been lost when she left me: my primary purpose for the last thirteen years.

But with all that being said, I’m still mostly sad for the loss of my mother’s life. I miss her and think incessantly about her. I wish so badly I could call her, touch her arm, hear her laugh, fix her some ice water, iron her clothes, give her a piece of candy, play a gospel song for her to enjoy, tell her a story about my college students, or give her a kiss on the cheek.

I’m I grieving the death of my mama? You damn straight I am.

I find myself grieving quietly and privately throughout the day while loading clothes in the washer, while washing dishes, while teaching my classes, and even while sitting on the sofa doing absolutely nothing.

Yesterday, I was chewing a piece of gum and enjoying the savory taste of the sugars in the gum. And without any warning, grief struck me in the belly. I was reminded how my mother was begging for water, ice chips, and a wet towel to put in her mouth as she was dying. She said her mouth was so so very dry. When the nurses weren’t looking, we put tiny drops of ice on her tongue to allow her some comfort in her dying moments.

When that thought entered my mind, I pulled that piece of gum out of my mouth, let down the passenger window of my sister’s car, and tossed the chewed up piece of gum out the window on to the freeway. My sister was like, “What’s wrong with you?” Before I knew it, I was blasting her and telling her how and why I was so offended when she accused me of not grieving. I told her that my grief pops up all the time and rather unexpectantly. And no one… And I mean no one has the right to tell me I’m not grieving the loss of my mother.

In the next few weeks, months, and perhaps years to come, I will continue to have memories of Mama that will haunt me rather than provide me comfort. My only prayer is that my grief is replaced with thanksgiving and joy as I heal and recover from the second greatest challenge of my life: the loss of my mom.

(I’ll give you one guess of what is the greatest challenge of my life.)